Calling all triple negative breast cancer patients in the UK
Comments
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Helo Mary,
Thank you for your post. I saw the pictures of the floods in Paris around the Seine. I know it was said on the French news that this was the worst flooding in a hundred years. It was ordinary people trying to clear up the mess, including rats, so where are the authorities?
Thank you for your kind words. Raymond was with me and it does make all the difference.
Your weather is certainly up and down. In this country we cannot cope with any difficult weather. Whatever we have the country is in chaos and the authorities always have excuses. It is the wrong kind of snow, the leaves on the railway lines are the wrong leaves and any storm always takes them by surprise!
I do not know where this country is going. We have increased numbers of people living on the streets (called rough living), increased numbers of people living in rented rooms etc. (called homeless) and the schools and hospitals underfunded and collapsing. We seem to have a shortage of doctors, surgeons, nurses etc. What we do not have a shortage of is politicians and especially the long-winded ones who live in a bubble and do nothing, except collect their pay and put in their expenses.
That is all for now.
Love.
Sylvia xxxx
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Hello Kath,
Thank you, Kath, for all that information about vaccines.
As children Raymond and I never had any vaccines. We had things like measles and whooping cough, but just recovered from them. I am pretty sure I did not have chicken pox, but Raymond thinks he did.
I know that I shall never again have a flu vaccine. I did read that antibiotics are put into them and they are not listed.
I am particularly interested in the shingles vaccine, but I shall never have one. It was introduced here a few years ago, a live vaccine, and availability was according to age in a certain year. Raymond had it and I do hope there will be no repercussions. I never qualified because criteria kept changing for age on my birthday, September 1st. It was all a bit nutty. I was either too old or too young.
I am glad I did not have it because people were being asked whether they had a compromised or depressed immune system. Most people do not have a clue.
I would like the experts to tell us whether the fact that we have been through cancer treatment makes our immune systems compromised. I think it does. Our immune systems have been put through hell because of the treatment and we have long lasting problems such as neuropathy.
I have read recently that if you have lymphoedema from a damaged lymph system, then you have a compromised immune system. Your lymph system is the drainage system for waste in your body and works in tandem with your immune system. The problem is lymphoedema is under diagnosed, not well recognised by GPs, so people do not know they have it.
One last question, why have the experts gone from a live vaccine for shingles to a dead one? Is it because it is cheaper. Have they now discovered that the live vaccine has problems? Is it because with the dead one, they can have you back and get more money for themselves.
I do not envy you all your heat.
Try not to worry and concentrate on the day.
Love.
Sylvia xxxx
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Hello Hanieh,
I am still catching up but I shall answer your post next.
Hello Maddy21,
Welcome to our group. I need to take a break but shall answer later.
Love.
Sylvia xxxx
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Hi Mary !
Im sorry to hear that happened to you too.
We went for her first blood check up on friday and then as we waited for her blood results her blood pressure just dropped. Her blood works showed her white blood cell count was at 0.2 and had to transfer her to the nearest hospital to be put under observation.
You are right about it being the wrong time to be put in hospital as she caught a chest infection and has had a fever for days now, she's been on antibiotics / saline via IV. Her IV burst out of her arm last night as she has very weak veins so they are giving her arm a rest. They've been poking at her arm to no avail.
She is being given the injection neupogen to bring up her white blood cell count, and like you her oncologist will adjust and reduce her next EC infusion which is in two weeks. - Her nurse had to show me how to administer it as she is given 3 injections to take home and to be taken for the next 3 days after her discharge. ( NOT for the squeamish took me a good 20 mins to inject her good thing she had a sense of humour and found it funny i was petrified )
Have you ever experienced lower back pain with EC? Mum had an awful 20 mins of agonising pain she said it was worse than labour pain it was quite frightening because all she did was cry and shout in pain until the pain meds kicked in and she slept off. I really hope round 2 goes smoother !
Happy she's back home today and resting !
Hope everyone had a restful weekend
Xx
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Hi Mary !
Im sorry to hear that happened to you too.
We went for her first blood check up on friday and then as we waited for her blood results her blood pressure just dropped. Her blood works showed her white blood cell count was at 0.2 and had to transfer her to the nearest hospital to be put under observation.
You are right about it being the wrong time to be put in hospital as she caught a chest infection and has had a fever for days now, she's been on antibiotics / saline via IV for days now. Her IV burst out of her arm last night as she has very weak veins so they are giving her arm a rest. They've been poking at her arm for days now to no avail.
She is being given the injection neupogen to bring up her white blood cell count, and like you her oncologist will adjust and reduce her next EC infusion which is in two weeks. - Her nurse had to show me how to administer it as she is given 3 injections to take home and to be taken for the next 3 days after her discharge. ( NOT for the squeamish took me a good 20 mins to inject her good thing she had a sense of humour and found it funny i was petrified )
Have you ever experienced lower back pain with EC? Mum had an awful 20 mins of agonising pain she said it was worse than labour pain it was quite frightening because all she did was cry and shout in pain until the pain meds kicked in and she slept off. I really hope round 2 goes smoother !
Happy she's back home today and resting !
Hope everyone had a restful weekend
Xx
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Hello Sarah,
I have just read your post to Mary and just wanted to say how sorry I was to read about what a bad time your mum has been having. I cannot believe how low here white blood cell count went and why she was not having Neupogen injections. I was so sorry to read that she had to go to hospital where she caught an infection and needed antibiotics. The situation in hospitals in the UK are not ones you want to be in. Having IV burst out of her arm must have been the last straw. I do hope she will make a full recovery and build up her resistance before getting the next chemotherapy infusion.
It is good to know that her oncologist is going to reduce her next EC infusion which os due in two weeks. Was she not offered weekly chemotherapy? I have said many times on the thread that women have said they find weekly chemotherapy much easier.
I am sure your mum will do better now that she is back home. She needs to build up her strength.
You asked Mary about back pain with EC. I think it is best and more prudent to ask the oncologist. I would think back pain like that is not a normal side effect. Is she drinking enough? Remember that you have to drink and drink, especially in the first few days, but throughout the chemotherapy treatment. Kidney stones can cause terrible pains, so you need to get that checked out for your mum. Please give her our very best wishes.
Love.
Sylvia xxxx
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Hello Hanieh,
Thank you for your posts.
I did see that it was snowing in Tehran and wondered how you were coping.
I do hope you start to feel better soon. The first week of chemotherapy is usually the most difficult of each infusion, but you have to remember that the effect of chemotherapy builds up as the sessions go on. You do need to drink plenty of water, get plenty of rest and relaxation and eat small healthy meals.
It is difficult for us on the thread to say what someone else should do about antioxidants and anything to do with complementary, alternative or homoeopathy. We all have to make our own decisions. I think that, as far as orthodox doctors are concerned, in the main, they believe in their own orthodox treatment, surgery, chemotherapy, radiotherapy and any other drugs.
I can only speak for myself and just made up my own mind when I took anything else. I took plenty of different things. As for other things being toxic, I do not think there can be much that is more toxic than chemotherapy drugs and radiotherapy! Perhaps someone else will have some different ideas. I have not tried bee propolis or royal jelly.
Thinking of you.
Love.
Sylvia xxxx
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Hello Maddy21,
I just wanted to welcome you to our group.
I noticed that you said you were diagnosed twelve months ago, that you have triple negative receptors and that you have had a lot of surgery. I was sorry to read that you had complications, both during and after surgery.
If I have understood correctly what you have said, you chose not to have any chemotherapy or radiotherapy. Correct me if I am wrong.
I understand that you have had a double mastectomy with reconstruction and that you are now in your third week of recovery from that. I do hope that you will soon be feeling good.
It would be useful if you put your details in your profile.
Why not tell us a bit about yourself? We are a very friendly group here.
Best wishes.
Sylvia xxxx
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Hello adagio,
I hope the post I put for you about prolia and shingles helped a bit.
I hope to hear from you soon.
Love.
Sylvia xxxx
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Hello Marias,
I am really concerned about the fact that we have not heard from you in quite a while and I am sure I am not alone in my concern.
If you can, please pop in, even if it is only to say hello.
Hello, also, to Lou in Singapore and Kathy28a.
I hope all is fine with both of you and that you will pop in to say hello.
Best wishes.
Sylvia xxxx
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Sylvia - thanks for your input on my questions about prolia and shingrix. I am not making a fast decision on either. I did read the link you gave me to prolia and it would appear that it does not work too much differently than the bisphosphonates - the same side effects of brittle bone, jaw necrosis, and then if one wants to discontinue it there are other side effects. I will most definitely not make this a rushed decision. Actually the only reason I started to reconsider is that a friend of mine has recently started this drug and she was totally opposed to bone meds prior to this - but last night, it suddenly dawned on my that she is on an aromotase inhibitor which can cause osteoporosis and since my friend already has osteoporosis, I am guessing that she thinks the Letrizole will make it worse. I am not on any type of medication, so that certainly does not apply to me.
I look forward to hearing what Kath says about the dead vaccine as opposed to the live one in the old Shingles shot.
In response to your question about a depressed immune system - I did ask my oncologist that very question last time I saw her, and she told me that my immune system is not compromised any more. She based this on recent blood tests showing that my white cell counts were back within the normal range. Doctors do rely on blood tests quite a bit, but I am thinking that perhaps not everything will show up in a single blood test, and I only get my blood values done once a year. I think your point about having a damaged lymph system is a valid one, though. Personally, I believe that the chemicals we have had (chemotherapy) have surely done some damage to our good cells - and I think that we can expect to see delayed repercussions of this treatment. It is a known fact that chemo and radiation can cause a secondary cancer somewhere in the body - albeit - it does not show up until years later - but I find it quite frightening.
I just read your post about your visit to the hospital today. I am glad that the biopsy shows that there is no malignancy in the mole. It is frustrating that you still have to have further surgery to widen the margin - but hopefully that will be the end of it. One would wonder why they would not take a wide margin to begin with? Your picture of the NHS sounds grim - ours is a bit better, I think, but it is not as good as it used to be. Just getting an appointment with a doctor here can take a week or more. We have "walk-in clinics" where one does not need an appointment, but it can be a long wait. The doctors one sees there are generally just out of med school and getting some experience. I have used the clinics a few times and have been quite happy with them. Then of course, if there is an emergency we go to the ER where the wait can be up to 6 hours, but they do triage which is helpful. But Emergency rooms are depressing places to be in my opinion.
Talking of wide margins around a mole or tumour. When I had my lumpectomy done, the surgeon would have done further surgery to widen the margins of the tumour, but the tumour was close to my chest wall, so I have a mere 0.5 millimetre margin which is very small - she said she could not do anything further without cutting into the chest wall and she did not want to do that at that time. This worried me for a long time, and it still does, but not much I can do about it or anyone else for that matter without major surgery.
I am going to see a doctor on Wednesday about this bizarre itchiness that I have - not really expecting too much - but I will ask for liver tests and maybe even a referral to a dermatologist. I am certain that he will prescribe cortisone - it seems to be their answer to all things "skin". I see cortisone as a band aid.
Hope you can rest easy for the remainder of the week and thanks for sharing your news with us.
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Hello adagio,
Thank you for your thoughtful post.
As for Prolia, I think you are wise to be cautious. I really think it is no better than bisphosphonates. I think people get too enthusiastic about these things.
It is good to know that you are not on any type of medication. It is the same for me.
It will be interesting to read what Kath has to say about that dead vaccine which has quickly replaced the live one. I shall not have it under any circumstances. I am now on a quest to get some answer about whether as cancer patients we are considered to have compromised immune systems. My common sense tells me that our immune systems must be compromised because they have suffered permanent damage through the long term effects of our treatment. Although I went through all my treatment with no problems at the time, it does not alter the fact that the treatment has left me with osteoporosis, peripheral neuropathy in the feet, and lymphoedema, which is considered chronic and without cure because the lymph system has been permanently damaged. I know that the lymphoedema makes me immune compromised and that is without the other things added on.
This morning I listened to BBC Radio 4, The Life Scientific, with Jim Al-Kahalilli. He was talking to Professor Wendy Barclay of Imperial College, London, an expert in the flu virus. It was very interesting and quite difficult to follow with reference to all the mutations that flu viruses go through. It made me feel that it will always be hit and miss whether the vaccines work. I picked up on something important that she said and that was that FLU VACCINES DO NOT WORK ON IMMUNE SYSTEMS THAT ARE COMPROMISED.
It looks as though I wasted my time having that flu vaccine after steering clear of them since 2005 and without them never having the slightest sniffle.
The programme is repeated tonight at 9:30 pm our time and is probably available as a podcast from the BBC Radio 4 website.
Incidentally, there is another regular programme tonight at 9 pm our time on BBC Radio 4 entitled Inside Health with Dr Mark Porter, who clarifies health issues.
With reference to the mole, I am glad I have had it removed, because apparently it did have the possibility to develop into cancer, but since it has been removed I have now been told that the possibility has been eliminated and that once the deeper biopsy is done, I am in the clear.
I picked up on what you said about it is a known fact that chemotherapy and radiation can cause secondary cancer somewhere in the body, and, like you, I find that frightening.
I asked the specialist nurse dealing with me quite a lot of questions, as I do, and made it quite clear that I did worry about all the consequences of my breast cancer treatment. She was adamant there was no connection between my breast cancer treatment and the mole. I still find it odd that the mole was on the right arm, my treatment side, and not the left. I am not even sure whether the mole was an old one or a new one!
I was quite put out and thought it rather tactless of the nurse to say that radiotherapy treatment for breast cancer could cause a sarcoma cancer to appear about fifteen years after treatment. I could have done without that at that moment. I still think that all this should be spelled out to a patient on diagnosis. I am now 12 years and 7 months since diagnosis, so I shall live strictly day by day.
I am concerned about more cutting into my right arm and all the waiting really frustrates me. I would have wanted it done on the spot, but I have been told I have a four week wait for an appointment. I suppose after that I shall have another four week wait for the result. In all, I shall have waited eighteen weeks to get this cleared up, so it makes me wonder what is the point of their quick referral mole clinic (two week wait) if all the rest drags on and on? I think part of the problem of our NHS seems to be bureaucracy.
When Raymond and I lived in Canada, we were very impressed with the Canadian health service, but that was a long time ago. There was no problem with seeing the GP and no problem with blood tests etc. The walk-in clinics were very useful. Of course, there was a small population and I think that helps. It sounds as though things have changed there. We liked the Ontario OHIP that we had at the time.
I do not know if any of the health systems in the west are now working. I do not know if insurance based systems are any better. I cannot understand how these countries all seem to have big populations of sick people.
Wild horses would not get me to an emergency department. They are dreadful places here. Raymond and I took my younger brother to one a few years ago, and we were there from 7 pm to 2 am. I went and said my piece at one of the reception desks when I saw handcuffed drunks being brought in by the police and given priority. We quickly got seen but I was not impressed.
Going back to the mole, I agree with you that common sense would indicate that you do a wide incision in the first place. I think the Vivascope is the best option, but I bet we do not get them here.
I think the introduction of the NHS in 1948 was our finest moment in this country, but it was not meant for the kind of over-populated country that we have in 2018 and all the expensive scans etc. that are used at the drop of a hat.
I do hope you get good news when you see the doctor on Wednesday about your bizarre itchiness. I think seeing a dermatologist would be a good idea. Like you, I think cortisone is a band-aid.
I think I am alright today, but my goal is to get away from hospital visits and that is for both the dermatology department and the lymphoedema clinic. All the lymphoedema will do is measure the arm and give out compression sleeves. I am measuring my own arm in a simple way, but at the clinic they seem to do it in percentages compared to the other arm. These are my recent measurements that I took.
Left arm Right arm (surgery side, lymphoedema)
Wrist 6 ½ 6 ½
Mid arm 9 9 ½
Elbow joint 10 10 ½
Upper 12 12 ½
To me that does not seem a lot of difference, but it was classified at the clinic as lymphoedema.
That is about all for now. Take care.
Love.
Sylvia xxxx
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Hello adagio,
The link to the Life Scientific podcast is
http://www.bbc.co.uk/programmes/b09plntp
Synopsis:
Wendy Barclay and the flu virus
The Life Scientific
2018 is having the worst flu season for seven years. Influenza continues to make a lot of us feel very ill, and it can of course be fatal. Wendy Barclay, Professor Virology at Imperial College London, has spent many years trying to learn everything she can about the way flu viruses behave. These microscopic infectious organisms are formidable foes - they mutate all the time, making it hard to predict which strain is going to be the one to make us sick and therefore to design effective vaccines against it.
Jim al-Khalili talks to Wendy Barclay about how she uses genetics to understand how flu viruses mutate. She explains how she began her scientific career studying physical sciences but then became fascinated by viruses. Her first experience of working with viruses was when she found herself doing nasal swabs of snuffling volunteers when she did her PhD looking for a vaccine against the common cold.
Love.
Sylvia xxxx
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Hi, Kath
About my knee, I had an appointment with orthopedic surgeon yesterday, this is the doc who put cortisone shot in knee 6 weeks ago that was unsuccessful. He walked into the room yesterday and said since the shot brought me no relief, he would not do the orthoscopic or laparoscopic surgery since in his opinion if the shot didn't work the surgery wouldn't work either. He said he is a surgeon, and would love to do surgery if he thought it would be successful, but he doesn't think it would be. He has referred me to the Pain Clinic which is in the same complex, and I have an appointment there for 2 weeks hence. He is suggesting a possible nerve block in the area. This is after reviewing the x-ray and MRI on my knee, which show arthritis under the knee, and some meniscus tears. I think they are suspecting that since my pain is not usual arthritic pain, but sharp pain combined with burning pain over and under knee, that it is also nerve-related. When I look up nerve block, I see that if that is successful they then do a nerve ablation, to deaden the nerves. Which may or may not work.
I was a bit upset after appointment, I am getting the same feeling I had after chemo when I was trying to find out why I had so much pain everywhere, I am afraid I am not going to get any answers and will be left on my own again. It was probably the briefest appointment I ever had, after about a minute he left the room saying he would be right back. He never came back, and I had questions for him, the nurse tried to find him and said if I waited he would come back when he could and answer me, I waited a little bit and left in a bad mood since I had already waited well over an hour for a one-minute appointment that could have been handled over the phone!
I also was looking up PRP (platelet-rich plasma) therapy this morning. It looks like my knee problems could be treated with this method, BUT if a patient has had breast cancer they would want the patient to wait until 5 years after diagnosis before undertaking. I am not there yet.
Sorry for your dark days, Kath, it sounds as if even on your dark days you are doing a lot of good through your work, it must be rewarding. Talk again soon!
Mary
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Hi, all
Sunrise this mornlng from my front yard.
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Hi Sylvia,
I must tell you I laughed out loud when I read your last post to me, regarding the way the politicians treat us and their poverty-stricken fellow citizens (rough living indeed); they make laws which affect all of us but they are mostly immune to all the effects of these laws. They cry out that we must not put up walls or worry about borders, but they wall themselves up behind gated homes, gated communities and walls of security police. They say we must think of the common good and make sure everyone has the same crappy Healthcare, while they have nothing but the best Healthcare, at our expense. They take money from us all of our working lives and say they will pay it back at retirement time, but they are exempt from this retirement system, they have a much better one, at our expense. They vote themselves raises, because they toil a few days of a week, for a few months a year; the rest of the time is spent raising money at expensive cocktail parties so they can go on doing it for a few more years.
My rant for the day. Gee whiz, first I do medical rant, then political, time to do some deep breathing!
Mary
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Hi Sylvia !
She was give the neupogen injection a day after her chemo - but i guess it wasn't good enough.
Her EC treatments are 3 weeks apart and is only having 3 infusions, her Taxol will be weekly for 12 weeks.
She is feeling significantly better today - her white blood cell counts are up after the we have been giving her the neupogen !
She is continuing her antibiotics orally as her veins kept on collapsing and poking her with the needle to no avail just made her arm so sore.
Xx
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Mary the view from your backyard is incredible !!! beautiful !
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HI, Sarah
Glad you like the pic, the colors I see with my eyes are so much more vivid than what translates onto this page, it was much redder and brighter. But there is always something to be glad of, that view this morning brightened my spirits.
Sorry for all your mom is going through, it all sounds so familiar. I also got the neupogen/neulasta shot on the day after infusion. It was a week later when I ended up in hospital, and did not start to feel better until they gave me more of the drug on the second day there. I got it again on the next 2 days and then was discharged day after that. I also was on IV antibiotics, I did not develop a major infection once there.
I am not sure what her back pain is from, I was given Adriamycin/Cytoxan and Taxotere. I imagine Ellence and Adriamycin are the same kind of drug. I do not remember having back pain from that.
Did you perhaps mean the back pain was from the neupogen? Some people have bone pain from that, usually in the legs.
Hope she gets to go home soon! Talk to you soon, love, Mary
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Sylvia,
I am all over the place this morning, a lot of interruptions, interspersed with a lovely sunrise. I don't think I told you I'm so glad about your mole surgery site being good, and I'm sorry you will have to go back. It is a lot of effort to put in for not a lot of news, I did that yesterday as I said above to Kath, I drove an hour and waited over an hour and then got about a minute of the doctor's time. And then was shuffled off to make an appointment for another doctor.
I am closing before I get off on another rant! You have been so busy catching up with everyone too, talk to you soon,
Love, Mary
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Maryna - your sunset is stunning - great photo! Also, just to say that your rants made me smile - not because of what you had to go through, but just knowing that we all have our moments of disillusionment, dissatisfaction and discouragement. Hang in there - we are all in this together. Sometimes talking to doctors is like talking to the wall, and often I feel it is better if we do our own thing anyway. I am sorry that you are no further ahead with your knee problem, though, and that your surgeon seemed quite dismissive. Hopefully the pain clinic will have some kind of program that will help. Have as good a day as you possibly can. And yes - breathe in - and breathe out!
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Hello Mary,
Thank you for your post dated January 30th.
I was glad to know that we share the same views about politicians. In the UK I do not know where we are going. I am sick of our politicians and how they are so full of themselves. They drone on about Brexit but I do not think they have a clue and they only care about big business. We have a country in crisis with our National Health System, our schools and our housing, but there is no common sense attitude to deal with these issues because they do not affect the politicians.
This morning, on the front page of the Daily Mirror, I saw the headline The Great British Cancer Scandal – Poor NHS funding leaves UK with worst survival rates. We have the worst survival rates in the five largest EU nations and for the percentage of cancer sufferers who are still alive five years after diagnosis. The five countries are Germany, France, Italy, Spain and Britain. For lung cancer, prostate cancer, pancreas cancer we are at the bottom of the five, and for breast cancer we are fourth out of five and Spain is bottom, but with breast cancer there is not a lot of difference. Britain is fourth with 85.6%, and Spain is bottom with 85.2%. France for breast cancer is first with 86.7% and Germany and Italy second equal with 86.0%. The highest survival rates with all five countries is for prostate cancer and by far the worst is for pancreas cancer, where the survival rates are very, very low, and they are not very good for lung cancer.
A big protest march is planned for London on Saturday about the state of the NHS and the underfunding and understaffing. More money need to go into the system and more staff are needed.
We need to control our population. The high population is spoiling our quality of life.
Talk about fiddling while Rome burns!
That is all for now.
Love.
Sylvia xxxx
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Hello Sarah,
I do hope your mum continues to make good progress.
I do hope she does much better on the weekly Taxol.
Since she is having trouble with her veins, why not ask for some kind of port? She really should have been offered this option.
I hope she will be able to get off the antibiotics soon. They do take a toll on the gut, so if that were me I would take some Sojade organic soy yoghurt with live culture to help the gut.
Take care.
Love.
Sylvia xxxx
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Hello Mary,
Thank you for the lovely photograph of your sunrise. We all need photographs like that to lift our mood.
Thank you for your kind words about the mole. I have got pretty fed up with all the slow activity on this. By the time it concludes I shall have waited 18 weeks in all. That is not good enough. The GP refers you to the two week mole clinic, but then you wait at least four weeks to have it removed, and then another four weeks to get the result, and now I am waiting four weeks for the surgery to go deeper, and then no doubt another four weeks to get the result. At that point I am going to discharge myself. Of course I am now worried once again about the possibility of problems because of the lymphoedema. Like you, I feel that I am doing a lot of ranting lately and sometimes feel like screaming with frustration.
Reading the paper today, I am angry at how poor cancer treatment is here and how cancer patient are dying because they are having to wait too long for treatment. I wish all the multimillionaires in this country of ours would put some of their money into the NHS to bring it up to par. They would not even miss the money. Where is there moral conscience?
I do share your frustration and disappointment with your long drive, long wait and lack of time with the doctor.
I do hope you get somewhere soon. My younger brother had that meniscus surgery on one of his knees, but it worked only for a time.
That is about all for now.
Love.
Sylvia xxxx
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Hello Sylvia, Mary, Sarah, Pam and all
Sylvia I'm happy to hear your results were good. I hope everything ends well too for your next surgery. I can understand how these long waits can be so frustrating.
Mary, I really loved your picture. I always love to live in a place like this. If only I have the chance to see the days of retirement when we can decide to leave our crowded city and live in the peace of nature.
Sara, I deeply pray your mom gets better fast and recover from all the side effects of chemo. It's really harsh but we have no other choice to save our lives.
The protests in Iran are continuing esp because we are on the anniversary of the Islamic revolution. People are really fed up with all the oppression of the regime esp the women who have been imposed to have hijab. Everyday, some women take off their head scarves as a sign of protest but unfortunately some of them are being arrested everyday.
Last night I went to a restaurant with my university friends in remembrance of the old days. I wish those carefree days would come back again.
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Hello Hanieh,
Thank you for your kind words. Yes, all the waiting is frustrating.
Thank you for your latest news. We are not getting much coverage here. I cannot see what is wrong with women showing their hair. Men show their hair, so what is the difference? It is just a way of control that has no logic.
Thank you for your lovely photograph. I am sure those carefree days will come back again.
Raymond and I have just been to see one of our friends and neighbour in a nursing home near where we live. She is very ill and is hardly able to eat. We are very concerned about her. It makes us realise we have to live the day and be thankful for small mercies.
Keep being optimistic and strong.
Love.
Sylvia xxxx
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HELLO!! im really sorry for did not write to you before. I had a bad time with fluw and with a lot of headache, and with photophobia, so I've been quite far from the PC for a long time.
The hospitalization is now ready for the I131 birthing machine. is on febrery 7- I trust everything goes well with this treatment and I do not have to repeat it.
I am on a very rigid diet without salt, and without any product that has or may have iodine.
so very low mood for the lack of eutirox and the possibility of enjoying a plate of delicious food.
I trust silvia all this well with your pathology, and that all the others are very well.
I hope to improve soon and I can be more attentive to your conversations, advice, recommendations and news about the advances in the different treatments.
a big hug for all
Abrazos
Marias
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hi Mary
Orthopaedic specialists are always very hard to deal with! They are either very very nice or absolutely horrible. There is never any middle ground. To leave u and not come back though is inexcusable!have u thought about getting a second opinion before u decide what u want to do with your knee. It frustrates me no end when drs do things like that!
Plasma rich infusions are done quite regularly in Australia and often now in medical centres as day visits not so much in hospitals. They apparently work really well so that may be another option for you as you are almost at the 5 year mark which is fabulous! Do u have a good relationship with ur Gp as shared care options are really promoted here in Australia? If u could sit down and talk about different options for your knee that would be great. Even if you could talk to your GP about a second opinion it might help!
Have a great weekend
Cheers
Kat
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HI, Sylvia
I wanted to let you know in case you hadn't seen the link, they are going to show the Vaccine Series, all 7 episodes in a marathon over this weekend. Sounds like for 48 hours it will be playing over and over for those who missed it.
I am sorry about the state of the NHS, and I'm afraid we're all going to be in the same boat as populations age. Do they say the cancer survival rates are because of lack of early testing? Or delays in treatment? Pancreatic cancer is a very tough cancer to beat. My aunt died very quickly from that cancer. I was told then that the pancreas is like a small sack, and if the tumor is on the bottom of the sack one can live quite a while. If the tumor is on the top of the sack at the opening, it is very bad. The tumor my aunt had was on the top, she died a few weeks after diagnosis. It is a cancer that doesn't have symptoms until usually too late. Also from where I sit it seems like they need methods of testing for lung cancer that can be done earlier. I saw articles on a new method some months ago, but they were only testing people who had been smoking a long time. I smoked when I was younger, and I've had cancer, but according to that article I would not yet be a candidate for early testing. It's possible the UK doesn't even have the equipment to perform this test since it's new, not sure what it entails. Lung cancer also is hard to catch early, and if one gets too aggressive with testing, they say there will be a lot of spots seen that are benign. No good answer there, unless this new test is really sensitive. A lot of men here have prostate cancer too, I have heard that sometimes they are over-aggressive with treating this cancer, I do recall my father-in-law had it but never had any treatment, lived a long time and died of something else. All situations are different, of course.
I did look at an article this morning titled "Heart problems more common for women who have had Breast Cancer Treatment." As if we didn't know that already! Why do more studies on things we already know, seems it would be better to devote time and resources to developing something that did not affect the heart of a Breast Cancer patient
I do hope you get to watch some of the Vaccines series, warning: parts of it are a bit unsettling.
I am sorry about the decline of your friend who is in the nursing home and not able to eat.
I did receive the book about the "Dental Diet" and have been reading it and finding it very interesting. The author really explains things in a way I have never heard before. I knew the mouth and teeth were important, but he explains how everything starts in the mouth and gut and basically controls the body. So far I am a little bit into his explaining the genetic component, I find it so interesting that the way our mothers ate while pregnant, and their mothers before them, and the fathers as well can affect our DNA. Nutrition is indeed so much more than just stuffing something in our mouth because we are hungry at the moment. It is no wonder there is so much illness in our countries. I heard a statistic while watching the Vaccine series, that 75% of Americans are overweight or obese. That is a crazy big number! Anyway, thanks for recommending, it is a fascinating book. My style of reading is to read quickly and then go back over topics again, but I am happy to discuss what I am reading. I have a new respect for dentists, periodontists, etc.
Have a good weekend, talk to you soon, love,
Mary
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Hello Marias,
I was really happy to find your post.
You do not need to say sorry for not posting for a little while. I completely understand that you are having a very difficult time. I can understand that you have had a bad case of flu and that you have not felt like typing posts. I was sorry to read that you have been having a lot of headaches and with headaches you do not want to be anywhere near a computer. I was interested to read that you have been suffering from photophobia. It is not something with which I am very familiar, but I can understand that you have not been using your computer.
I shall be thinking of you on February 7th when you have your treatment. This is the radioactive iodine treatment. How long will you be in hospital? I am not quite sure what the reference about a machine means. If I understand your treatment correctly, you will be in some kind of isolation unit.
Can you explain the diet without salt? Do you normally put salt on your food and is your salt iodised? I have never salted my food and it is not iodised here. There is enough natural salt in our food and we do not need to put salt on it. Salting food makes you put on weight as it makes you retain water.
I suppose you must not eat any seafood or even fish for the moment.
You can make nice meals without these things.
You say your mood is low because you are not taking the medication Eutirox, which is used for underactive thyroid problems, just like Levothyroxine. Are you being told to fast, that is not eat, before your treatment? If you are fasting, you will enjoy your food all the more after your treatment.
Thank you for asking about my biopsy result. I have to go back to the hospital for a bit more surgery to go a bit deeper and then I should be in the clear. I want to discharge myself as soon as possible, but I have a four week wait.
You will get back to more normal days and we can all look forward to interesting posts and lovely photographs.
Abrazos.
Sylvia xxxx
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