Calling all triple negative breast cancer patients in the UK
Comments
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Hello Gill,
Thank you for your latest post. I shall try to reply later as I have quite a few things to do today.
Thinking of you and sending love and best wishes.
Sylvia xxxx
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Thanks, Gill,
That was really helpful. My nails are really awful looking--not that I was ever overly indulgent about them. But they seem to be growing out. They're also really growing quickly. I don't remember them ever growing this fast. The are separating from the nail bed at the end and they need to be cut. It makes me a little nervous, but I'll do it. I can definitely see the line of the damaged area and the regrowth.
I'm waiting for my hair to grow out. It's still fuzzy, but I can see some of my regular hair coming in. And the clothes. I am not finding anything in my current wardrobe to wear. I'll have to go out after the surgery or order online. I'm not much of a shopper, but we'll see about that too.
I know it's going to take time to regain my stamina. I walk a few times per day and I do the exercise bike one time. Needless to say, I'm exhausted at night and sleeping well. I'm thankful that I'm not stuck in bed all day!
This has sure been an ordeal! I'm glad I'm finally on the other side of the hill. I'll be glad when it's all finished!
Love, Sue
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Hello Gill,
I do agree about patients being truly informed about every aspect of their treatment. When I was first diagnosed I read a book I have often mentioned entitled The Cancer Directory and I think it was new in 2005 when I was diagnosed. I read it cover to cover and when I went for my second appointment with the breast cancer surgeon, I had already sent her a list of questions and she had all the answers prepared. She told me that my questioning was very unusual and that most patients just wanted to get on and have some treatment. I have never been that way inclined. I question everything.
As you know, I had chemotherapy first and I made sure I found out as much as I could about the drugs when I first mt with the oncologist. She answered any questions I had which were more limited then than they would be now. She did tell me that she was going to have to poison my body in order to make me better. I asked for any pamphlets that were available on the chemotherapy drugs that were going to be administered.
Sorry, shall have to continue later. Someone is buzzing me.
Love.
Sylvia xxxx
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Hello Gill,
I was talking about melanoma skin cancer when I got interrupted. I just wanted to continue by saying that this melanoma is the most serious of the three main types of skin cancer. The other two main forms of skin cancer are basal cell carcinoma and squamous cell carcinoma. These are non melanoma types. Malignant melanoma needs treatment as it may be fatal.
As you can see, that, although we tend to think that radiotherapy is easy, it never the less has serious side effects.
I think we should all be careful about not overdoing exposure to the sun. We need some sunshine to get out vitamin D but we do not need hours in the sun to get an adequate supply. The body will only take in the amount it needs and the rest is wasted. I am not in favour of sunblocks but that is my own personal choice. I also prefer not to take in the sun between 11am and 3pm when the sun is hottest. I would never lie out in the sun for hours on end. Red burnt skin is not what you want.
The nurse at the mole clinic told me that you can also get bone sarcomas as a result of radiotherapy but that it is rare.
In all of this we have to focus on the fact that we have survived breast cancer and take life one day at a time. Yes, we have lymphoedema, neuropathy etc. but we cope and that is all we can do. It would be interesting to hear from patients with their stories of coping with any side effects from the various parts of the standard cancer treatment and any extra treatment.
I am longing for September 5th to get this ludicrous leadership contest out of the way. It will be the same old team and it would not surprise me to find Boris Johnson back in it! I have just received the latest edition of Paris Match and lo and behold I find a photograph of Stanley Johnson (father) and Boris Johnson standing in front of a huge French castle. Stanley Johnson has become a naturalised Frenchman. Apparently his grandmother or someone was French.
That is about all for now. It has been a busy day. I have a few comments about what is going on with the GP surgeries but I shall do that another time.
Thinking of you and hoping the terrible heat will not return and that the rains will come soon.
Love.
Sylvia xxxx
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Hello Sylvia,
Yes, the Johnson family is of mixed race, French, Turkish, American, English. Boris Johnson was a great supporter of our continued membership of the EU - until he saw that leaving could provide him with the opportunity to become King of the World. There's a rumour that he's going to be offered the post of NATO chief. If so, prepare for WWIII.
I agree that it would be interesting if those who've been treated for triple negative b/c could keep the rest of us informed about side effects of the latest drugs or if there are ways of countering the side effects. You'll remember that I took ice and a bowl big enough for my feet to go in plus the ice packs. The idea was to help protect my toes from neuropathy. Well, I did escape neuropathy, but who knows if the ice worked or if I was just lucky. I was the only one in the chemotherapy unit who used ice and it raised a few eyebrows.
Malignant melanoma is extremely serious and needs urgent treatment. I simply don't understand the sun worshippers. The sun ruins your skin permanently, looking like leather by the time I was 45 never appealed! I saw many people lose their lives to melanoma whilst working in the local hospice and some were in there 20's and 30's. My grandchildren have always been covered in high factor sun screen before going to school or playing out of doors. People need to check the soles and sides of their feet and both fingernails and toenails regularly. Frequent Sunbathers are particularly susceptible to melanomas on the soles. I think your raising of the issues around radiotherapy and susceptibility to skin cancer is so important - and it needs discussing here regularly.
I never thought radiotherapy was an easy option and I was hugely relieved when I was told that it was no longer offered to patients who'd had a mastectomy. I was concerned that as my cancer was left sided, my heart was at risk. I still stand by this, but was told by my breast surgeon that I was mistaken. Michael argued the point and neither of us were satisfied with the response. We judged it to be simplistic and unscientific. I think you and I must be a real thorn in the side for our medics - and long may it be so.
The Leadership contest is embarrassing. What an appalling pair! We need a General Election, though how this mess can ever be put right is a mystery. We've burnt our bridges with Europe for years to come, which was probably the idea. Heaven help our NHS.
Much cooler here today, hope it's the same in Exmouth.
Take care,
Gill xxx
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Hi Sue,
I remember someone describing her post chemo nails as making her look like Cruella Deville. I think I must have escaped the worst of it, icing and black nail polish might have helped? I'm a very keen gardener and like to get my hands in the soil, so beautiful nails was never going to be my strong point. Would love to have nice, youthful hands though instead of what I actually have. They instantly give my age away.
Your hair seems to be doing well, very quick to start growing. Mine came back curly, but straightened. I actually quite liked the curls, especially when my hair grew longer, but it wasn't to be. Chemotherapy improved my skin, no spots, no open pores, less oil. I had the best complexion I've ever had, but that didn't last long. The hair on my legs wasted no time and was back to normal before any other part of me, hair under my arms never returned - we all deserve a bonus and this was mine.
Clothes shopping isn't something I do in person any more. It's just not enjoyable, especially with covid. I buy clothes via the internet and always look out for offers. Shoe shopping is totally frustrating, it means having to go into the city as none of the sizing is particularly accurate here. I just try making shoes last for as long as possible.
Sue, you're doing very well. Admire your determination to get fit enough to be told you can go back to work. Teaching is obviously something you love and you're very fortunate to have an enjoyable and rewarding job. Teaching was my original profession but it just wasn't right for me. I find messing about with old documents in the archive suits me better.
Keep doing exactly what you are doing, but listen to your body too.
Love,
Gill xxx
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Thanks Gill!
Someone else told me that hair grows back curly after chemo. My hair was very curly to begin with, so I'm wondering what will happen! It's coming in slowly and very light, almost like when I was a child. It's so interesting. The hair on my legs is growing too, but not the hair under my arms.
When I started chemo, I was presented with cold packing as an option for neuropathy. But it was winter and I am definitely not a fan of the cold, so I passed on that. My hands are good, no issues except for my fingernails. The nails are growing out quickly and fast. I trimmed them the other day and they're starting to look better. A few of my toes still have a bit of that pins and needles feeling, but I exercise my feet and toes when I am sitting down and I think it's improving.
I had a friend who did some cold capping to try to save her hair. When her chemo ended, she still had a lot of her hair. But a week or so later, it all fell out. She was so disappointed. But it is growing back quickly. She is about a month or so ahead of me with finishing chemo.
I guess the side effects affect everyone differently. I had terrible acid reflux in the beginning, but not for the second round. The things I could eat without feeling sick were limited. I lost a lot of weight because I only ate a small amount of things and sometimes nothing at all, aside from an Ensure drink.
I think the best advice I had was to stick with things I was already doing. Use the same lotion and shampoo I was using (someone told me to keep using my same shampoo even if I had no hair to keep moisture in my scalp). Figure out what you can eat and eat lots of small meals. I did have some issues with the texture of foods during chemo. Things felt terrible in my mouth and throat and made me gag. My husband said that his biggest worry was trying to find things that I could/would eat.
I am thankful that I've been able to exercise a bit. On days that I feel tired, I just take it easy and rest. My brain is clearing from the fog and it feels good to be awake and aware all the time.
Glad to hear it's getting a bit cooler. Stay safe and healthy.
Love, Sue
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Hi Sue,
Your comments are so useful for those who browse the thread looking for information from someone who's been through chemotherapy very recently. Many people look, but don't wish to comment and that's fine - though comments, different viewpoints, different experiences are important and help to build our knowledge. Perhaps some avoid posting here because they don't want to become too involved, or have very little time to respond to replies to their comments? Anyone, from anywhere in the world is welcome to post and one comment or just one or two comments is just fine. All experiences are valid. Anger, disbelief, frustration is part and parcel of cancer, so feel free to let rip too! Posts from friends and relatives of those undergoing cancer treatment are also welcome.
Cold capping wasn't offered to me as it was all booked up. Two friends who tried it said it was extremely uncomfortable and made the chemotherapy session twice as long. They both gave up. Your friend must be very disappointed that she put up with all the discomfort of the cold cap experience, only for her hair to fall out a week or so later.
My brain fog isn't as bad as it was, but I do keep forgetting words and names. Your fog is clearing very quickly. I've come to the conclusion that younger women recover more quickly from chemo induced memory deficits than those who are post menopause.
Much cooler here today and showers are due tomorrow. Rain dance worked?
Love,
Gill xxx
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Thank you, Sylvia,
I was angry and scared in the beginning (and at many other times too). The thing that got me through the last 7 months is people supporting me. My husband, of course, was on duty 24/7. He went through some rough times. But I made sure that on good days, he got to do things that were helpful for his own mental health--like play golf.
This site, as well as work colleagues and friends were SO helpful in getting through this time. I received so many cards, emails, and text messages throughout this whole ordeal. I did my best to answer every single one. It was so uplifting and motivating to know that there were people out there pulling for me. Since I couldn't see many people in person, I found the other contacts so joyful and that helped me stay positive. Mindset is important.
I still have more to come. Surgery is Tuesday. That's a little scary. Then radiation will be next. I still have 8 doses of Keytruda as well. But thankfully, I'm able to eat, walk, and ride my exercise bike. My brain fog is annoying when I can't remember names and certain words, but it's getting better.
Stay safe and healthy! Love, Sue
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Hello Gill,
Thank you for your post from July 28th. I do hope that rumour about Boris Johnson being offered the post of NATO chief does not come true. Knowing his character how can anyone think of him for that position? Between him and Zelensky the war in Ukraine has gone on for much longer that was needed. Every country has a right to defend its borders and that is what Russia was trying to do. I am sure that we are heading for WWIII. In the UK we should be doing something about protecting our own borders instead of this open to all policy.
I asked my oncologist about the ice packs for the head to avoid losing hair and she told me that she was not in favour of it because of the risk of infection. I know that it was a very long procedure and prolonged the time of the chemotherapy infusion.
As you say, malignant melanoma is very serious and people should use their common sense about sun exposure. Too much of it prematurely ages your skin. I think people should be aware of the risk factors of radiotherapy. Above all with everything associated with their treatment, patients should not be pushed into doing things they do not want to do. I tend to question everything and put my point but I am never rude, just assertive.
I do hope we get more posts from people telling us about their treatments for the different types of breast cancer, what drugs they are being given and why. We need to keep informed and get a variety of opinions and suggestions.
I do agree with you that this leadership contest is embarrassing. The only democratic thing to do is to have a general election. Why should 160,000 Conservative Party members decide who will be the Prime Minister of this country? I also think we should have another referendum on Brexit. We were not told the truth about the situation and the result was too close.
The weather here today is cloudy and heavy, but still no rain.
What do you think about the monkey pox pandemic? Did you see all the people queueing up outside Guys Hospital yesterday for smallpox vaccinations?
Thinking of you.
Love.
Sylvia xxxx
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Hello Sue,
I have just been reading the posts that you and Gill have written and was glad to see you communicating. It is true that we all experience chemotherapy in different ways and I realise that my journey was fairly easy compared to a lot of others. Feeling more tired than usual was what I remember most of all. Apart from that, I continued very much as usual. My husband, Raymond, was a rock for me and I was so glad to have him by my side while I was going through the infusions.
I was very careful about what I was doing and took the advice given by my all-women medical team. I did not eat any sea-food or raw salad food for fear of infection. I kept away from crowded places and was careful about visitors. I also avoided public transport and tried to keep physically active. I did gardening but was very careful not to get any cuts or bites.
I do not know what it would have been like teaching 11 to 18s whilst undergoing chemotherapy. I would probably have had to take sick leave!
I was glad to read that you have had such a lot of support. That is essential.
I shall be thinking of you on Tuesday when you have your surgery. Tell yourself it will soon be over and you are going to be fine
you said that you still have eight doses of Keytruda. Will this carry on while you are recovering from surgery or will you have some kind of break?
I was glad to know that you are eating, walking and riding your exercise bike. Do not worry about brain fog. I am sure it will pass.
Take care of yourself and be strong and optimistic.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
I'm becoming more concerned about monkey pox. Infections aren't usually too serious and people recover, but people are now dying and it's spreading with frightening speed. We have no Government, no plans, no guidance has come from the Health Secretary and hospitals will be left to plan and cope without any extra funding again. Cancer is increasing, covid is by no means over, monkey pox, rapid climate change. Maybe we should have looked after our planet, we've been given enough warning. The human race was never going to survive forever, successful though it was, all things end. Pessimistic? I hope so. We're living through interesting times, no denying that.
Sue's recovering well from chemotherapy and will be pleased to have her surgery out of the way tomorrow. I do wonder how helenlouise is coping, it's nearly 3 months since she last posted. I was also thinking about Peter and Liz, Flora's mother and viewfinder's sister. Adagio has also had a lot to cope with since her heart surgery. Adagio and Raymond both know how difficult serious heart surgery is to recover from and the additional health issues it can create. Psychological damage must also be a factor and I doubt if many hospitals have the wherewithal to deal with it. I remember the excellent oncology registrar telling me that ideally I should have been referred to an onco-psychologist after the trauma of sepsis and c-difficile. Some of the London hospitals offer this, but mental health is very low on the agenda in most areas. Surely mental wellbeing is part and parcel of our physical recovery?
I don't usually watch football, but did watch the England women's final yesterday and I'm very glad that I did. The stadium was packed, the fans extremely good natured, no threatening the referee and no play acting from 'injured' players on the pitch. Of course, there was no Prime Minister to cheer them on as he'd been partying through the night at a Tory donors Cotswold pile. I hope he realises that public sector workers are legally bound to register gifts? I doubt if the donor will want anything in return!
The weather is sunny, but not too hot here today. Yesterday brought several prolonged showers, but not enough to make much difference to the garden. Harvest began early this year in the fields near us, farmers working through the night.
Wishing you and Raymond a safe and peaceful week.
Love,
Gill xxx
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Hi Sue,
I'll be thinking of you tomorrow. Remember that this surgery is very quick, modern anaesthetics are very safe and recovery is very quick and nausea free - unlike the anaesthetics of our childhood.
Love,
Gill xxx
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Hello Gill,
I think we should all be concerned about monkeypox. We are such a mixed up world that all viruses etc. will spread rapidly and we may not be able to cope as well with these as the countries from which they have spread. There is another nasty virus in Sudan, so with everyone darting around the planet, how long before it is in the UK?
Like you, I am glad that Sue is recovering well. Like you, I also wonder about how past posters are getting on. I do hope HelenLouise is coping as she has been through such a lot. Peter and Liz always had interesting posts and it would be nice to hear from Flora's mother and viewfinder's sister, not to mention adagio.
I do agree with all that you said about the importance of mental health and it is very much neglected here in the UK.
It is unbelievable that the Prime Minister cannot see how immoral it is to be having extravagant parties in such hard times. What a shambles our parliament is. I doubt whether I shall ever vote again. Our two main parties need clearing out and we need two new ones.
I have bumped up the two forums and certain threads within them to refresh about parathyroid disease and breast cancer and high calcium levels. It was on these threads that I first posted when I was looking for information about hyperparathyroidism and breast cancer. Have a look at them. They should be on the first page oof Active Topics. The two forums are as follows.
Not Diagnosed with Recurrence or Metastases but Concerned (Forum) Thread – High Blood Calcium Levels.
IDC invasive ductal carcinoma (Forum) Thread – Parathyroid Disease and Breast Cancer.
There are just a few hundred posts in each thread so it is easy to read them completely.
The weather is cloudy here but no rain.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
When collecting my last prescription a couple of weeks ago, there was a note attached asking me to book my annual blood test with a care assistant. You can probably guess what I'm going to say. The online forms for requesting an appointment with a nurse or healthcare assistant are no longer available. GP appointments are closed, phone calls are for patients who need to see a GP urgently and if the problem looks like an emergency, call an ambulance (which will take hours to arrive and leave you waiting in a queue outside A&E as there are no beds available). There's no air conditioning in ambulances here. Just asked a friend if she would recommend her surgery which is in a small town only 4 miles outside the village. Definitely not, problems exactly the same. I have a dental checkup tomorrow afternoon and will call at the GP surgery in person to see what's going on. This is assuming that I can locate a human being. I really don't want to blame people working at the surgery as I know that many GPs and nurses have simply had enough and left the health service.
Some are reporting that Johnson didn't attend the women's football final yesterday in case he was booed. You'd think he'd be used to that by now. The continued extravagant behaviour of this Prime Minister and his Eton cohorts will lead to riots if he's not careful. Ordinary working people and those who are unable to work through no fault of their own have a right to adequate housing, healthcare, food and heating. This country is rapidly heading towards pre war levels of poverty. It's a wonder that Rees- Mogg hasn't reintroduced workhouses and pre school age chimney sweeps. Privatising essential services is stealing from the public, it needs to stop and sometimes taking to the streets is the only solution.
I often read through other threads just to see if there's anything new or something that could be of wider benefit. The whole site is much quieter than when I first joined and many regular posters have disappeared.
I've just booked a cruise for 2024. We've never been on one before but we both needed something to look forward to. Sincerely hope this Government will be out by then.
Keep safe and well.
Love,
Gill xxx
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Hi Sylvia and Gill,
Surgery went well yesterday. I had a pre-procedure where they inserted a wire to help the surgeon locate the mass during surgery. The also inserted a blue dye to evaluate the lymph nodes. Then I went back to a room to wait for surgery. I was only there for a few minutes until the anesthesiologist came in to explain what she was going to do. She gave me a "relaxation" drug and I remember being wheeled into the hallway, but nothing else until I woke up in recovery.
The surgeon said she was very happy with how things went and would give me details in the follow-up appointment next week. That was fine because I couldn't remember much that people were telling me after surgery. I came home after that and took it easy the rest of the day.
The surgeon called to check up on my last night but I was already asleep. 9:30 has been generally when I've just gone to sleep. I woke up around 4 a.m. and needed ice and some Tylenol, but other than that, I'm doing okay.
I'll keep this one short. But I do wish there was a way to search posts on this site using keywords. That might be helpful for applicable posts to read. Oh well.
Stay safe and cool!
Love, Sue
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Hi Sue,
Well that's over! You were certainly treated well and everything was done in a timely way, without fuss. I expect that you'll be given some exercises to do in a few days. For now you should avoid lifting , carrying, stretching - easier than it sounds. I was up at 7 am the day after my mastectomy and immediately stood up and stretched both arms over my head, opening the wound. No pain, so just forgot that I'd had surgery.
When you click on the hamburger to go to 'community', just continue to scroll up and you'll see 'search', click onto it and there's an option to search keywords.
Rest today, remember that you've had a general anaesthetic and your body needs time to adjust and heal.
Love,
Gill xxx
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Hello Gill,
Thank you for your latest post.
It is very frustrating dealing with any aspect of our health service these insane days. Having pushed and pushed people to go online, it now looks as though they want to keep us away. Raymond received a message on his email informing him that he now cannot order repeat prescriptions online and that a batch of medication, lasting about six months, will be sent to the pharmacy who deals with them and that he has to phone the pharmacist to do this. He phoned the pharmacist on Monday and was told that the pharmacist would now have to contact the GP surgery to get approved and then the surgery would send it back to the pharmacist!! The pharmacist told him it would take two days to do this. This morning there was a buzz to our apartment and lo and behold it was the pharmacy delivery service with his repeat prescription. In addition, Raymond decided to request some other medication to deal with his heavy leg, went online to the surgery and ordered it without any problem. That medication, ordered yesterday, was in the medication pack delivered today!!!
We also had fun and games trying to book our flu jabs online. Raymond could not get anywhere. I decided to phone and eventually was able to book them but it took a long time and they are not until September. I seem not to exist for the health service in all of this as I could not be found on records. This seems to be because I am not on any medication. It seems that if you want to be known you have to put yourself on some medication. By your pills are ye known!
As you say, you cannot get a face to face appointment unless it is urgent and if it is urgent you have to phone 111 (or even 999)!
I have a brother here in Exmouth who has been harassed several times with phone calls from the surgery, no proper message, just call the surgery. He was then told to go in and it was all about trying to force him to take pills he does not want to take. This is hardly good use of face to face appointments!
I share your frustration about lack of humans on the phone. It drives you up the wall.
I do wish the leadership nonsense could come to an end. It is useless. There is a group of Boris Johnson's supporters who are trying to get his name on the leadership ballot. It is beyond belief and Boris is blaming the red wall MPs for his downfall. He has said that they have spent too much time on Twitter. At the weekend there was the big wedding celebration on some big country estate. Talk about living it up when others cannot feed themselves. There was also an article about Boris Johnson and his father, with photographs, at some huge French castle where they were getting to know their French cousins! He does not even say "Let them eat cake" like Marie Antoinette! He is too busy eating cake himself!
The less I say about Rees-Mogg the better. He is an anachronism.
Like you, I ofent read other threads and often go to the Active Topics. I do not recognise many names these days, so I think that most people do not stay on for long. It is a pity because it would be good to know what happens to them. I did read one post from someone who had had breast cancer three times and had suffered from radiation induced morphea. I had not heard of this. Apparently it is an autoimmune disorder of the skin. The person had also had chemo-induced heart failure. I remember I had ECGs before and after treatment and was told all was OK. However, you do not really know what will happen long-term to your heart ot anything else.
I do hope we shall get some more posts about all the aspects of breast cancer. I would be quite interested to know whether breast cancers such as lobular, inflammatory, and, indeed, your own metaplastic breast cancer, are more likely to be hormonal tumour status or negative.
Reading the different threads I realise that having hormonal tumour status is no picnic because of the years you have to spend on anti-hormonal medication with all the nasty side effects.
It is good to know that Sue has got through her surgery.
I was interested to know that you have booked a cruise for 2024. Where are you going? Raymond and I have never been on one.
That is about all for now. I am beginning to despair of ever getting any rain. I am sure there will be measures over water use everywhere.
Take care.
Love and best wishes.
Sylvia xxxx
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Hello Sue,
I was glad to read that your surgery had gone well. It is good news that your surgeon said that everything had gone well. It will be very interesting to get the details.
Take care and do not overdo things.
There is a search box where you can fill in key words to lead you to whatever information you are looking for. If you go to the index you will find a list of different words that lead you to different subjects. The list starts with:
All topics
Active topics
My favorites
Private messages
Dashboard
Find members
Search.
This is pretty easy to do.
I often look at Active topics. There are usually about ten short pages. The shortness of Active topics shows me that the whole forum is a lot less active than it used to be.
I hope this helps.
Love and best wishes.
Sylvia xxxx
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Hi Sue, and thank you, Silvia for your help!
Just chiming in to share our FAQ section, that has detailed instructions on how to use the search function and explains everything on how to make the best use of our forums.
Hope this helps!
The Mods
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Hello Sylvia,
I'm not at all surprised by yours and your brother's frustration with your GP services. Ours are virtually non existent as so many staff members have left. There's a deliberate move by this Government to keep local health services ridiculously short of funding, forcing doctors and other clinicians out, encouraging public dissatisfaction and then selling off to private healthcare companies. We have just lost another GP here, hardworking, but disillusioned. She's leaving medicine. I'm so fed up with people telling me that GPs are lazy and overpaid. It's a lie spread by our extreme right wing press with the sole aim of undermining and destroying everything in society that's of any value. Money rules. My heart goes out to the sick and frail who need quality health and social care. I often reflect on what would happen if my cancer came back, or Michael's health became worse. I know so many people who are living their lives in fear of the future.
Boris Johnson and the Eton brigade partied once again while 'Rome burned'. A cost of living crisis, monkey pox infections growing with frightening speed, the Bank of England issuing dire warnings about inflation, a leadership contest between two vacuous liars, in which the vast majority of the public cannot vote and there's literally no one in Government to make any kind of decision. An ITV news programme is showing an empty chair as there's no one from the Tories to interview. We're banned from demonstrating and noisy gatherings will be dispersed. No dissent and those who no longer love England to be sent for re-education under the 'Pevent' scheme originally designed to detect future terrorists. I'm reminded of 1984, or do I mean Spain in the 1930's?
I had an echocardiogram before chemotherapy, but nothing afterwards. So my heart was normal for my age before, no idea how good it is now. I don't know anyone in the UK who was offered an echocardiogram after all that toxic treatment. I'm very glad that I avoided radiation on the left side. I agree that reading through the different threads set up for women with hormone positive cancer makes you realise that taking long term medication is no picnic. Younger women often have a particularly difficult time. I've noticed several women who are stopping oestrogen inhibitors while trying to become pregnant. What a difficult decision to have to make. We sometimes have to be grateful that although we have breast cancer, it could be a lot worse. Metaplastic breast cancer is overwhelmingly triple negative and I'm more than happy to be TN. I've read scientific articles about metaplastic patients who are 'slightly' oestrogen positive. I think being slightly oestrogen or Her2 positive just confuses the issue. I have come across one reliable source that stated that statistically, triple negative metaplastic cancers actually have a better survival rate than other metaplastic breast cancers. The difficulty in assessing survival in metaplastic cancers is that at least two completely different cell types are involved. I have spindle cells mixed with adenosquamous, but there's quite a number of variations. I tied to find out the percentage of spindle cells to adenosquamous, but drew a blank from pathology.
Like you, we desperately need rain here. The leaves are falling very early this year as the trees battle to survive.
Enjoy your weekend and save some time just for you and Raymond to enjoy together.
Love,
Gill xxx
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Hello again,
Just realised that a post written (and thought lost), has appeared. It's dated August 2nd. Enjoy!
Gill X
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Hi everyone!
I'm just checking in to say hi. I'm 6 days out from surgery and I'm feeling good. Sleeping has been getting better and I no longer take any pain meds (I only took Tylenol for 2 days after surgery). My incision is itchy, which I take as a good healing sign.
I have to wear a compression bra 24/7 until my followup appointment of Thursday. It's not the most comfortable thing to wear, but it's not for very long.
The odd thing about medicine in the US is that we have these medical portals. The docs don't really pay too much attention to them (they really don't have time). I'm guessing the nurses monitor the portals. But everything that happens, especially in my hospital portal shows up in the portal online. My bone scan showed up 2 days before the doctor called me to discuss it. Thankfully it wasn't bad news!
On Wednesday and Thursday of last week, my doctors' notes showed up describing all the procedures. That was okay, because I knew the doctors felt that everything went well. But on Friday, the pathology reports showed up. And although I don't understand all that doctor-speak without looking up every word, it appeared as though it was saying no metastases in any of the lymph nodes. I didn't see anything about the direct breast tissue pathology. I noticed that later in the day my surgeon modified the report. But I didn't see much change in there--it was hard to tell.
I know my follow up appointment is Thursday. But if the report is in my portal, then I think someone should call me and let me know basically what it says and means. It's annoying. And I know everyone is busy. But then don't put the report in my portal. Wait until it is discussed with me. It's frustrating.
Weather is very hot here. Occasionally, we get some quick downpours or a storm in the middle of the night. But it's not enough rain. We're under some water restrictions here, but not severe. My flowers are looking a bit wilted as are my tomatoes. The only plant that seems to be moving along is the pumpkin that grew on its own. It's orange--in August! Our trees are dropping dead leaves. And it kind of looks like the beginning of fall.
I hope you are all well and staying cool.
Love, Sue
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Hello Gill,
I do agree with what you say in your latest post. Money rules. It is true that ordinary people are living their lives in fear of the future. This Conservative government does not care and we are living in a Conservative fiefdom which is one of the things I feared most from Brexit. The Conservatives are in league with the powerful right-wing press and big business. I think Boris Johnson doing pantomime dancing at his post-wedding bash says it all. It was shameful.
I do not think much of the two leadership contestants and on September 5th whoever wins it will be the same old government.
What kind of country are we when we are letting all these people walk through our borders and we spend untold sums of money on them. That is our money and should be spent to solve our own problems.
We urgently need a general election. It is not right that a handful of Tory members are voting for the next Prime Minister. That is not the behaviour of a democracy. We need another referendum on Brexit because the present one has not been delivered. We also need a referendum on what kind of country we want. We are overcrowded and too many people are coming in and this cannot go on.
I was interested to read about the information you gave on metaplastic cancers and the different cell types involved. Cancer is such a complicated disease.
That is about all for now. I am dreading this week because of the heatwave predicted.
Love and best wishes.
Sylvia xxxx
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Hello Sue,
I am just popping in to say that I am glad all is going well for you.
I do understand how you feel about what you call 'portals'. I did not have anything like that during my treatment. The oncologist and breast cancer surgeon called me in for an appointment with both of them together. They were beaming and said they were glad to report that everything was fine with my pathology report and that I was NED (no evidence of disease). I do not think patients were given their pathology reports back then, but it may be different now in the UK because of being able to have remote access to our records, at least from anything to do with the GP such as results of routine blood tests. Raymond and I have this but it is full of 'medicalese'. We are both very informed in that respect but it is still anxiety-causing. I do not know whether hospital patient get anything sent online. Hospital pathology reports may be more complicated and patients may get anxiety from too much information.
I am concerned about where all this private information ends up.
Keep up the good work.
Love and best wishes.
Sylvia xxxx
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Hello Sylvia,
Quality research regarding metaplastic breast cancer is hard to find just because it's so rare. I think causes and treatment for it will be discovered by accident, stem cell research perhaps. Spindle cells would usually make muscle, never breast tissue. Spindle cells are sometimes discovered in cancers of the oral cavity. More puzzling is the fact that spindle cells are very occasionally discoverd weeks or months after surgery for bladder cancer, appearing along the line of dissection. To me, it seems like a completely different cancer to all other breast cancers. It's failure to respond fully and commonly, not at all, to chemotherapy makes it different to standard triple negative cancer. I wish more funding could be made available, but there isn't much chance of that.
We desperately need a General Election and a Government that could restore our membership of the EU, our human rights - particularly the right to free speech - and our National Health Service. Not a mention of the NHS from either PM candidate.
With climate change there isn't a hope of ending the refugee crisis. People will do whatever they can to protect themselves and their families. The idea of sending people to Rwanda is a national disgrace, what a cruel and uncaring country we've become. The Daily Mail et al might like to know thet England takes considerably less immigrants than most other countries in Europe. The word's obviously got out!
I don't like this heat at all, the grass is brown and so many plants, hedges and trees are struggling. I have no idea why people are walking around uncovered in the sun. Skin cancers will be the new pandemic at this rate.
Keep safe and well.
Love,
Gill xxx
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Hi Sue,
I can remember my mastectomy scar itching during the healing process, under my arm where I'd had my nodes removed was just as bad. The feeling under my left arm never returned, I suppose that some of the nerves were cut through. It doesn't bother me in the least.
I can see why you might be frustrated by things not being fully explained. It's the same in England, only everything is much, much slower. Your waiting times for treatment and surgery would be considered good here, especially since covid struck. I'd never heard of patients having portals until some patients from the USA mentioned them. Nothing was done via the internet when I had treatment, the hospital IT system in my area is probably too complex for doctors and nurses to have time for. Much simpler to write or phone. Face to face is always best, but Covid seems to have left many patients with 'telephone consultations' which can be useful, but not when you actually need a physical examination. I had pain under my left arm and a small hard lump in my upper left back and was referred to the breast surgeon for a scan and a physical examination - eventually had a very quick telephone call from a breast surgeon I'd never met before who thought I'd be ok. Very reassuring!
Keep taking things a day at a time, you're body has been through so much, be kind to it.
Love,
Gill xxx
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Hello Gill,
What you had to say about spindle cells is very interesting. It just shows you how complicated cancer is. I do remember reading about how stem cells can stay dormant in the body for ages and then develop into something causing cancer. There must be something that is making the body malfunction.
I have really given up on politicians of all parties. I have lost faith in the Labour party and think we need a new democratic socialist party for the people. However, I do not think this country will ever become truly fair and democratic. The rich and powerful are truly in command and the population is brainwashed. The leadership contest is a load of nonsense and we shall end up with more or less the same team on the Conservative front benches. We should have had a general election but even with that it would be the same old thing.
On Tuesday we had to go to the hospital (RD&E) for Raymond to get his pacemaker checked. We are lucky to have a community car service so we had ordered one to take us to the hospital and back. The hospital, at least Cardiology, seemed very quiet. We wore our masks but it was hit and miss whether other patients and indeed staff, were doing the same. Raymond got seen too pretty quickly. We have a few questions following that appointment, so today I phoned our surgery and everything now seems to be running quite smoothly. I phoned, on Raymond's behalf. I was second in the queue and did not wait for long. I said I was phoning to book a face to face with our GP to discuss issues from the pacemaker tests. I was pleasantly surprised to learn that the report from that test had just arrived at the surgery and the receptionist actually read it out to me. The appointment was arranged for Monday August 22. I shall keep you informed.
Things seem far from right with cancer treatments on the NHS. There are still way too many patients waiting to get diagnosed, let alone treated. We now have the added complication of polio. They are still finding the virus in the sewerage especially in East London.
I still think the main problem in this country is overpopulation and lack of control of illegal immigration. The whole world is overpopulated and I do not think the planet was meant to be like this. I think Nature has had enough of us.
I am longing for the heat to go away and for the rain to come and remain steadily for many weeks!
I think we are going to see a lot of activity with vaccinations. I think there will be a push for more coronavirus vaccinations, as well as vaccinations for flu, monkeypox, polio and goodness knows what else. I know there is another nasty virus, Marburg virus, in Africa. Everything spreads so quickly today. Marburg virus is extremely nasty and dangerous and affects humans and primates.
I do hope some of our group will get in touch. We need to hear from Mary, HelenLouise, Kath and adagio.
I felt sad about Olivia Newton John and her long journey with breast cancer. When I was diagnosed in 2005 her case was much in the news. It all makes me realise that with this disease you can never take anything for granted.
That is all for today. Thinking of you. Stay safe and stay cool.
Love.
Sylvia xxxx
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Hello everyone!
Good news! My pathology reports showed no cancer in the lymph nodes and no metastasis. A 3 millimeter tumor was removed during surgery, which was a size greatly reduced from the original tumor. The oncologist sees no need for additional chemo (thankfully). The surgeon pronounced me cancer free yesterday. I go back at 3 months for a check-up. I still need to do radiation and finish the Keytruda cycle. But my oncologist said that, if I'm ready, I can return to work around November 1st. His note for my employer says November 30th. He told me he'd just give me a little extra time in case I need it.
I'm very happy that this has gone so well. Even though I had some bumps along the way, I consider myself very lucky. It was sad to hear about Olivia Newton-John. It's sad to hear when any breast cancer patient dies.
I think our political situation is similar to yours. Entitled people in "power" and not doing much thinking about the regular people who elected them in the first place. The thing that really angers me is reading about the oil company profits. How can we allow that to happen when normal people struggle to put gasoline in their tanks? Not to mention the celebrities who fly around in their jets, wasting even more fuel.
It's a strange world we live in.
It's been really hot here. Fortunately, we have had a little rain here and there, but we need more. Today is supposed to be a bit cooler (well, 84-can't believe we think of that as cooler). We continue to have water restrictions, and they've gotten a bit more serious. But I too am hoping for some significant rain!
Stay healthy and safe!
Love, Sue
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Hello Sylvia,
I've just been reading something about 'chartered cities'. Rishi Sunak is very keen on them and liz Truss is easily persuaded/stupid. Chartered cities are basically cities that are owned and run by private companies. All services, police, healthcare, schools, courts. The citizens will have no say, all the shots are called by the owning company/companies. Corruption would be rife, it already is, but it will be much worse. I think we should read more about this very worrying concept.
I do wonder how helenlouise is, particularly as she'd had some bad news last time she wrote.
I'm impressed with your recent GP and hospital experience. I doubt if the Norfolk and Norwich University Hospital will recover from the covid backlog. It's saddled with a huge PFI debt. Lizz Truss' constituency has a large hospital with a roof held up by steel poles to prevent it collapsing. Some wards are closed for safety reasons. All of the patients will have to be transferred in the near future, causing even more pressure for the NNUH to cope with. Our local group of GPs, three practices, are very short of doctors and qualified staff now. I can't imagine that my own surgery will stagger on for much longer. It's very worrying for us.
I've heard from a friend in London that flu vaccinations will begin in September. A bit too early as the flu season doesn't begin until Christmas and immunology doesn't usually last long. I've heard nothing about covid vaccinations. We had our three jabs and weren't offered any more, friends in the South had four and in two cases five jabs.
It looks as though it might rain here tomorrow and on Tuesday. We can only hope.
Take care.
Love,
Gill xxx
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