Calling all triple negative breast cancer patients in the UK
Comments
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Hello linali,
I was so glad to hear from you. I am just going to have a little break and then I shall get back to you.
Thinking of you, Sylvia.
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Hello linali
I was so glad to know that you liked the lace hydrangea. It looks quite a picture in the grounds and the white tinged with blue stands out.I hope your potatoes will be alright. I have heard that this rainy weather has been very bad for them. Keep your fingers crossed.
It has been very warm here in Exmouth today. I tried to do some work on the big rockery we have in the grounds, but could not do too much because of the high humidity.
I was really glad to have your opinion on the Truefaces sight and to know that you feel positive about it. I thought it was excellent and says it like it is. Often, on the internet, when it comes to things medical, there is too much jargon for an ordinary person to understand. I like things to get to the point and, like you, I do not like pussyfooting around. It makes all the difference to me when I get feedback from postings, otherwise it is hard to know whether people are following up the links. I agree with you about the doctors. I hope many of them read that site. We do not want to be talked to. We want a two way dialogue of equals.
I can understand your anger about you GP and consultant ignoring your skin condition for ages. I am glad that you dealt with it in your own way. With this horrible disease we can leave no stone unturned. Nobody is as interested in our health as we are. I agree with what I have read about having an advocate at your side, and one who is not part of the medical team.
It is truly shameful that your brother-in-law was never diagnosed until he collapsed. Remember to be pushy and make sure you get the best possible treatment for your brother-in-law. I do not think it is morally right for doctors not to be around at the weekend. They need their breaks, like the rest of us, but there should be a seven-day schedule around the clock for GPs and consultants. Our bodies have no notion of weekends when they have to avoid being ill. What would happen if no one manned the fire station and police station at the weekend, not to mention the power stations!!!
I do hope you will get your invalidity claim sorted out, as worrying about that is a source of stress that you need to avoid. I am convinced that stress shocks our body and manifests itself in aches and pains and illness. We get only one shot at life, so why should we have to go through it full of worry and anxiety?
I do hope you enjoy your reiki sessions.
I find it strange that you are having to wait so long for your mammogram results when I was told mine straight after the mammogram. My understanding is that they have digital machines now and that you do not have to wait for film to be developed. Why put patients through 10 to 14 days of unnecessary worry?
Thank you for your concern about other patients going through treatment. Voicing that is so kind and so important to people experiencing problems with their treatment. you seem such a caring person. I think the heat pad is a good idea. Your arm needs to be warm to find the vein.
I would be interested to know what kind of cancers the women at your centre have. I wish you all the best with your bras and I think that non-wired bras are a good idea for all women.
It is unbelievable what has happened in Denver. I think there is so much violence on the television etc. that the lines between what is real and what is not real are becoming blurred. I have been watching two series called Blackout and Wallander and then I feel creepy when I go to bed. I need to go to bed on something that makes me laugh, like Miranda or Not Going Out.
Thinking of you and hoping you now have some sunshine.
Best wishes
Sylvia0 -
Hello everyone
I have just read the last print out that I made from the website www.trufacesofbreastcancer.com.This one is entitled Eating and Cancer and it starts off with what I consider to be a very important sentence. It is "Your best defence for keeping your immune system in peak condition is to keep your body in balance with nutrition". It goes on to say "One third of all people with cancer die due to being malnourished".
Please read the rest of the details. The link is:
http://www.truefacesofbreastcancer.com/eating-and-cancer.html
Amongst other things, this article recommends consultation with a nutritionist prior to and after cancer treatment.
There is a lot about glucose and how it fuels cancer.
This article also says think "low-carb, low-fat" for less chance of recurrence.
That is all for this evening.
Best wishes
Sylvia0 -
Good evening Sylvia ..what lovely pictures! I have a Hydrangea (lace) bush that has also done very well this year!
I am so sorry to read Michael's story and the very sad passing of his beloved wife! I had not heard of a Hematoma before..so that is another thing i have to worry about now! The Mac nurse has already drained my seroma once..and it filled again straight away..now she is reluctant to drain it again because of infection...i do despair at the total 'lack' of interest and certainly ....no compassion!
Things are not good again Sylvia ..although i still retain my sense of humour! I have been let down yet again ..regarding my shower unit! Last minute again too..by a 'reputable' company and nothing i can do about it either....
This morning i had an 'emergency' appt with my ONC ..they always seem to be emergencys ..so i never have time to prepare myself for it! It now seems the onc wants me to go ahead with the CT scan..and is now..saying yes my lung nodules could indeed be cancer...and if it is..i will need 12 weekly doses of Taxol chemo! I read that it ..can kill you! Rather extreme?...Then radiation if this is lung cancer...so my surgeon must have known they where thinking on these lines ..when he said 'we have gone for a cure..by removing so much..but you will get pallitive care'.. My onc even argued with some venom at how large my tumour had become..she said ..that is NOT what i have written down here..and got quite HEATED about it! I didn't back down either!!! 6 and half cms..
Now Sylvia i am very very worried ..i dont want chemo as i didn't do well last time..so if it is bad news..i might have to make a descision whether to have ANY more treatment at all! My onc does not care one jot..and this morning it was as if she was doing ME a favour by fitting me in at all! I am arranging to see a counsellor to talk ..on my thoughts..if it is indeed the worst news! If i was to have to have chemo again..i will not be able to look after my OH ..at the moment i now have my freedom back..and am able to go shopping for nice 'tasty' things he and i might fancy..
My OH is having more tests tomorrow and we have a lot more tests still to go..
I am also prepared to get a loan against my home..if there is treatment to be had at the Royal Marsden..or abroad ..i am very upset..
I have let it go with my son ...i have far to much going on here..with my OH and myself...and i will have to not think too much about my beloved grandson...whom i love so dearly...
My son has been so cruel especially concerning my OH ..he is just not worth it..you are so right that at these times ..you soon find out who your 'real' friends are..and get nice suprises from people you least expect it from!
Your thoughts would be most appreciated yet again Sylvia!
Dulcie xxxx
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Sylvia ..i meant to mention the fact of being 'talked down to' by the surgeons ..oncologists..and i have yet to know what the radiation people are like..i have been told so little ..it is frightening...!! I did ask the surgeon for a Path Report..his eyebrows shot up and...he did say...'hmm well i suppose it's your body'..'yes ok then'...the arrogance...
Are we all 'talked' down to when we have these cancers that are uncommon?..especially the slightly more unusual Metaplastic? Is it to do with the fact that ...they don't really know..and are afraid if you ask certain questions ..that they have not got a clue about!!
Maybe it is just me and most of the lovely ladies on this thread have had more compassion shown them? But i also think 'ageism' comes into play..now the NHS is making so many cut backs..
I was in my building society yesterday and they had a young member of staff that had passed...leaving a young boy! She had a tumour in her upper leg..and was doing nicely on a 'trial'..until they stopped it because of the cost! I didn't think things like that happened especially once you where on it..and to leave the child without his mother! Heartbreaking!
Dulcie xxxx
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Hi Sylvia
Thank you for your reply, I will give you some background to Janette and myself.
I met Janette in 1976 when she was 17 and I was 23. We were together for about 4 years but like so many men I had a fear of commitment so we separated but as I got older I regretted that . In the meantime Janette had married and had 3 children.
I got on with life and was diagnosed with Non Hodgkins Lymphoma in 1996. In 2000 & 2001, I had chemo and radiotherapy which I must say was very easy on me. In Feburary 2004, by chance, I came across Janette's name and address in a database I was working on. I contacted her and found that she was divorced, alone and had got herself a Ph'd. Basically we carried on from where we had left off and we married in November 2004.
In June 2007, when Janette was 48, she found a lump in her breast; I would say it was about 2cm, rather like an egg. We immediately went to the GP and the ball was rolling. The one stop clinic confirmed from ultrasound it was cancer and surgery was scheduled. The original operation was a lumpectomy but the margins were not clear so she had to go back for another operation to remove the whole breast. DCIS was found throughout the tissue of the breast. I don't know what the stage or grade of the tumour but I know the nodes were clear. She was told that she would not need radiotherapy but would have 3 FEC and 3 Taxotare. At the same time I was getting unwell myself and had to have 8 cycles of chemotherapy. So on the whole I managed to have chemo on the weeks Janette wasn't, so that I could take care of her. Again I found my chemo easy whereas Janette was floored by Taxotare.
Janette never asked for her prognosis and wasn't too keen on getting too much clinical information. She did join groups on the net, I think she probably had an account on this group as I see there is a chatterbox2007. She asked me not too research her illness because she didn't entirely approve of the obsession I had about researching my own illness. I think my experience with lymphoma lulled me into a false sense of security; I felt that Janette's cancer had probably had been cured, and if it hadn't then there would be another chemo protocol to take care of it.
Janette went for genetic testing in October 2010 and was told the results would take a year. When they did come and she was already sick there was no defect in BRACA 1 or 2.
I can understand Janette choosing to have her other breast removed although personally I thought it was a bad move, I would certainly have waited for the gene tests to come back, but perhaps as Janette was approaching the 5 year mark, she felt the clock was ticking. When she did have the operation she developed the hematoma. Thereafter she complained of severe pain at the site which was diagnosed as nerve pain, but I wonder, it could have been the tumour developing.
Janette's expertise on Michel Foucault developed whilst doing her degree in social psycology. She then did her Ph'd thesis on the experience of mothers bringing up children with ADHD and she used Foucauldian discourse. I hope I have got that right, it certainly sounds convincing.
I hope this has answered your questions and if not feel free to ask. I certainly find it helpful posting here as I know that you are all aware of what I am talking about, whereas friends and family don't really have a clue
Michael
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Hi to everyone, sorry I have been absent for a while.
Sylvia, the flowers are beautiful. As always, the information you provide is invaluable.
Linali, the disability system here makes no sense. I have just been refused. I cannot use my right arm properly and because of my hip issues (degeneration caused by the radiotherapy) can no longer drive very far. I live 15 miles from town but that doesn't seem to be an issue.
Dulcie, I must say the care I receive is second to none. My family live in the UK and I know that the level of care over there is appalling.
Michael, I am so sorry for your loss. I totally agree with Sylvia, research and information is sorely lacking in regard to TNBC. It is only because of Sylvia and her dedicated reseach that I have attained the levels information on this dreadful disease and it's consequences.
I fully understand that friends and family do not understand - it can be a lonely journey. The forums on this site are invaluable not only for information but also for support and understanding.
Warm wishes to you all.
Bernie
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Hello Dulcie
Thank you for your post and for expressing your appreciation of the photographs. It has been an ideal year for hydrangeas.I do appreciate your posting to support Michael at a time of great sorrow for him and all the more so with all the problems you are going through. I do so want this thread to be about support and comfort as well as information. A few kind words can make all the difference to someone's day and help to get them through the hours.
Do not start worrying about haemotomas. They are a localised collection of blood vessels (usually clotted) that is caused by bleeding from a ruptured blood vessel. You have enough to worry about.
As for the seroma that you have, from reading the threads on this forum, it is something that does occur after breast surgery, and it should clear up. If you want more information the link about seromas is:
http://en.wikipedia.org/wiki/Seroma
A seroma is totally different from a haemotoma. I am not a doctor, but I would have thought you had to keep draining it until it stopped producing serous liquid. A Macmillan nurse should know what she is doing. If the liquid is not drained, have you asked what happens to it? Can the body absorb it? Keep asking questions and keep remembering this is your body. I would also have thought that a Macmillan nurse would have to show some compassion. It could be that medical people see so much of illness, suffering and death that they have to keep a hardened outer shell in order to keep their emotions in check.
I was so sorry to hear that things are not good again, Dulcie, but it is good news that you retain your sense of humour. I am sure that will help a lot. I know how it feels about being let down by companies, but I think it is par for the course these days. I hate having to call in anyone to do work, and I am always on edge when we order anything. Recently we have ordered some new net curtains for our apartment. My husband carefully measured everything and everything has been checked and re-checked, but I still find myself worrying that when they come back, something will be wrong!! I do hope you will get your shower unit sorted out. Just focus on the fact that it is your health that must take centre stage at the moment.
I do understand that you would prefer to have time to prepare for your appointment with your oncologist. However, it is better to be called in quickly than to be put on long waiting lists. I would have thought that a CT scan would have been ordered straight away to ascertain what the lung nodules were. Were they discovered by an ordinary x-ray? Is an MRI scan not possible instead of a CT scan? Sometime ago we did talk about scans and I remember saying that CT scans worked through ionising radiation but an MRI scan is non-ionising radiation. You could ask why a CT scan? Let us keep our fingers crossed that these nodules are not malignant. If it were me, I would want the scan done without delay, be told what the nodules are, and whether they could be treated and how?
If I were you I would ask whether the nodules could be treated with radiotherapy only and if so how much radiotherapy you would need. Remember that the radiotherapy would deal only with the localised lung problem. Chemotherapy on the other hand is systemic and will treat the whole body. If you are told you need both, it seems you have no option but to accept. If you do not have treatment the situation might get worse.
I have read that weekly chemotherapy is more effective than the three-weekly one. My understanding is that, on the weekly cycle, you get a lower dose but more often, but this is something you should check with your oncologist. You could also ask why she wants to use Taxol (paclitaxel) rather than Taxotere (docetaxel). Both of these belong to the group known as taxanes. Reading through the threads, I got the impression that Taxol seemed to be used more in the US and Taxotere in the UK. What I do remember clearly from my own treatment is that I asked my oncologist why she had chosen Taxotere rather than Taxol and she told me that the Taxotere was less harmful. Do not go frightening yourself about Taxol. Even if you have read that it can kill you, that will be a rare side effect. I remember after I had finished my three months of epirubicin and cyclophosphomide, and I had my first dose of paclitaxel, I asked the nurse at the chemotherapy clinic for literature on the drug. She went and got some leaflets, read it through and said the side effects listed here would frighten anybody off. The side effects that I had were few. I did lose my eyebrows and eyelashes and some of my toenails went a bit brown. I later had strange feelings in my feet - neuropathy. I still have it a bit but it does not seem to bother me.
I do not know what to say about your oncologist. I only wish you could have had my one. She is very calm and understanding and answers all my questions.
If you have decided that you do not want chemotherapy, perhaps you should really ask what they can do with just radiotherapy. Your oncologist may be suggesting weekly chemotherapy so that the dose is not so strong. What is important to remember is that the dose of chemotherapy you are given depends on YOUR WEIGHT AND HEIGHT, so it is important that you are measured and weighed correctly.
If you really cannot get on with your oncologist, perhaps you can ask to change. It is so important to have a good relationship and feel at ease with your medical team.
I think it is a good idea to see a counsellor and express everything that is going through your head.
I do hope that everything will get settled with your OH as quickly as possible, so that you know what you are facing together. It may be that you will have to get in some help.
If you want to get a second opinion or be seen at the Royal Marsden, if I were you I would do it without delay.
I think you have been wise in letting it go with your son. It is not worth the stress. You and your OH have to concentrate on each other. I do hope you have some friends or neighbours who can help out. Do you have any other children who could help?
I do hope some of this may help, Dulcie. Look after yourself and try to look forward.
Do not let anyone, and that includes medical people, talk down to you. Do not be afraid of the radiotherapy people. Much earlier on in the thread we talked about preparing for radiotherapy. Your oncologist will arrange for you to have an appointment in which you will be shown a prototype of the actual radiotherapy machine. You lie on this and the radiotherapist marks out the target area for radiotherapy. You will then wait for an appointment for the actual radiotherapy treatment. the treatment is very quick and you are in and out in no time. You have to go five days a week for how many weeks are stipulated. I can tell you that it is quite easy compared to chemotherapy. You just have to look after your skin and rest. You will find plenty of details if you look back in the earlier pages of this thread. When you know exactly what you are doing I can repeat information.
You have every right to ask for your pathology report and you have every right to look at all your medical records. When I was diagnosed this was not usual and seven years on I do not want to see my pathology report. In the US pathology reports to patients seem to be standard.
I am quite sure there is ageism in the NHS.
That is very tragic about the lady and the young boy. We have to fight like mad not to have drugs unavailable to us, whatever the cost. No bureaucrat has the right to make that decision about somebody's life.
Thinking of you.
Sylvia
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Hello Michael
Thank you for your post. Reading the lines I was much moved by your story. It was so romantic and yet so sad that it had to end in tragedy. I was sorry to hear that you had been diagnosed with Non Hodgkin's Lymphoma, but glad that you survived it. With chemotherapy and radiotherapy, none of us knows how we are going to react to the treatment, whether we are going to have allergic reactions, have bad side effects, low blood counts, infections and so on. It is all very individual. That is why on the threads on breastcancer.org forum we cannot generalise. All we can do is relate our own experiences and give tips on what we did to get through it. I was glad to know that chemotherapy and radiotherapy were easy on you. I think a lot depends on your state of health when diagnosed and how well your immune system reacts.How strange that in 2004 you should find Janette's name and address in a database you were working on. It must have taken courage to contact her. It must have been a strange experience getting together after 28 years of not being in touch and of not knowing what each of you were doing. How romantic that you were able to carry on where you had left off and that you had the happy ending of marriage and being together after all those years.
What a shock it must have been when Janette found that lump in June 2007 at the age of 48. A lump of 2 cms would probably have been about stage 1 or 2. It was probably grade 3, as most TNBCs are. It was good that you got procedures started early. She appears to have had the standard treatment of surgery, chemotherapy and radiotherapy. I know from friends of mine that with lumpectomies they often do not get clear margins. A friend of mine had a lumpectomy and then had to have more surgery because of lack of clear margins. Apparently, if you have these two surgeries and there are still problems, it is advised that you have a mastectomy. I had a large tumour and had to have a mastectomy of the right breast, but I would have opted for this even if I had had a very small tumour. It is my own opinion, but I feel that there is more reassurance with a mastectomy. At least that is how it was for me. I know that, today, breast preserving surgery seems to be in favour.
The chemotherapy that she had was standard as well. I had 3 months of EC and then 3 months of Taxotere. I was surprised that with TNBC she was not offered radiotherapy, but all hospitals seem to be different and oncologists appear to have their own preferences. The women I know who had no nodes affected, had lumpectomies and radiotherapy, but no chemotherapy. However, they had hormonal breast cancer. Since TNBC is said to be very aggressive, mastectomies are probably advisable.
It must have been awful for the two of you both being unwell and having chemotherapy. You have been through exactly what Dulcie is going through and what she may have to face with her other half. I could not have got through my breast cancer journey without the solid support of my husband.
What kind of chemotherapy drugs did you have the second time around? Were they different from the first lot? I was glad to know that you found chemotherapy easy again. You must be very strong. A lot of people find Taxotere difficult.
I can understand why Janette did not ask for her prognosis and was not keen on getting too much clinical information. This is the way some patients seem to cope with their diagnosis. They just want their medical team to get on and do whatever they have to do to make them better. I am exactly the opposite and want to know everything. In June 2005, when I was diagnosed, TNBC was very much in the dark, at least in the UK. I was just told that I did not have hormonal breast cancer and that I was oestrogen and progesterone negative. Later I was told that I was HER2 negative. With all of this I was told that the prognosis was not good and that after chemotherapy, surgery and radiotherapy, there was nothing I could take, as Tamoxifen, used for hormonal breast cancer would be of no use. I started researching and sending letters to my consultant surgeon and oncologist, asking all sorts of questions. I did not discover this forum until 2009 and it was to do with breast cancer and hyperparathyroidism, with which I had been diagnosed in 2005 at the same time as the breast cancer. Some research shows a possible connection between the two. I sent the research to my medical team about this but it was all new to them.
I think you did the right thing researching your lymphoma. Did you do research into TNBC, even though Janette was not keen on it?
One thing I have learned from this forum is that you cannot take anything for granted. I do not think there is a cure for cancer as yet. All you can say is that you have no visible cancer at any time, but you have to live with the fact that it can come back any time anywhere. That is the horror of this disease. We all have cancer cells in our body and we get cancer when everything somehow gets out of control. We need to find a way to prevent this disease. Prevention is easier than cure. It probably is true that our experts can often come up with another drug to prolong life. However, it is well known that, with secondary cancers, there is no pretence at curing you, just stabilising and trying to keep you alive.
Not having the BRCA1 or BRCA2 gene is good news, but it does not mean that your cancer will not return.
It must have taken courage for Janette to choose to have her other breast removed, even though it was healthy. It is not something that I could do. Surgery is a trauma in the body and I would be too afraid of what is being stirred up in my body. Surgery is also undermining your immune system and anaesthetic is only detrimental to us. To have done this, Janette must have been very afraid.
It is ironic about the five year mark, because, with TNBC, we read that the greatest chance of recurrence etc. is in the first few years and that the further you go away from diagnosis the better your chance of surviving longer. I suppose there must be statistics for this, but I am not convinced. Our bodies do not know about statistics! It is sad but you will never know what might have been had she not had the other breast removed. With a small tumour, no nodes, no faulty genes and chemotherapy, you would have expected a good outcome. However, with cancer, there are no hard and fast rules. With what I know now, in Janette's place I would have asked for radiotherapy to complete the treatment the first time round.
Janette's PhD sounds very interesting. I was wondering whether she was writng from personal experience with her own children.
I am so glad to know that you find it helpful posting here. It will help you to put everything together and perhaps help a little with the loss of your wife. It might help to give you clues about the charity that you want to set up. You are right about friends and family not having a clue. Unless you have had cancer you can have no idea what patients go through and how they are affected. You are never quite the person that you were before diagnosis and cancer is always in some little corner of your brain.
I do hope you have some people around you that can help a bit. What are you doing to keep busy? Are you still working? Do you have some hobbies? You might be interested in looking up Jane Tomlinson. She had breast cancer at a very young age, survived a long time. She set up a charity and when she died her husband continued it. I read her book when I was going through treatment and it was truly inspirational. Are you going to any local support groups?
The link to the Jane Tomlinson site is:
http://www.janetomlinsonappeal.com/
Wishing you all the very best
Sylvia0 -
Hello Bernie Ellen,
Thank you for popping in to offer your support. It is badlly needed. I want to do a proper, meaningful post to you, so I will do it tomorrow. I have had a really busy day and the heat has made me tired.
Fond thoughts,
Sylvia.
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Hi Sylvia
Janette's thesis was not based on her own children, I think she wanted to explore a little understood or considered experience.
I didn't give a lot of thought about why Janette didn't have radiotherapy. When she was diagnosed we had homes in Northern Ireland and Brentwood England. As Janette's children were either at School or University in South East England she opted to be treated at Queens in Romford. With my lymphoma there was a new, very expensive drug called Rituximab that was rationed in England but dispensed like Smarties here in NI, so I opted for treatment here. I would have my treatment, spend 5 days injecting myself with a drug to boost white cell production and then fly over to England to go with Janette to get her treatment. When she finished we sold the Brentwood home and settled here. The consultants at Belfast City Hospital told her that they would have given exactly the same treatment.
The first chemo I had was called chlorambucil, apparently it was the first chemo drug. It is a pill and very mild. My second regime was R-CVP which is rituximab, cyclophosphamide, vincristine and prednisolone, again fairly mild. I guess they may use it again at my next relapse or they move onto a stronger protocol.
I am with you on not having unnecessary surgery but I suppose there is no evidence to support that.
I took medical retirement from my job as a finance manager but I do part time research for IPSOS MORI but that is not enough to fill the void left from Janette's death and that is one of the reasons I am wanting to startma charity. I also want to move back to England because all of my friends are there, plus the step children and janette is buried in a woodland cemetery near Brentwood.
As far as the charity is concerned I have all the paper work lined up but I just need to define its aims and purpose. I think the education/information route is probably the way to go with the ultimate aim to provide funding for a research post/s. On a more mundane level there would be information made available. What sort of information/education do you think is lacking at present?
I have a question that you may have an explanation for. Janette's cancer eturned in her lung which i understand is the second most common place for return; why then, are patients not given a chest xray at each check up?
Michael
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Hello BernieEllen
Thank you for your appreciation of the photographs of the flowers. If you have any from your garden, please post them. We need to find ways of cheering ourselves up.Thank you also for your appreciation of the information posted on the thread. If you have any, please post. Any bit of information is helpful and might of specific help to anyone going through treatment. Tips on easing treatment are always very useful.
I was interested to read that you think the disability system in Ireland makes no sense. The Disability Living Allowance here in England makes no sense either. I cannot understand why you and linali cannot have your disability allowance. All I know is that here in England the system is confusing. When I was diagnosed and my oncologist asked me whether I wanted the support of the Hospiscare nurses through treatment, and I said yes, they came with papers for me to sign on their first visit. They told me that I was entitled to DLA because of being diagnosed with breast cancer and that it was not income related. I received it, and it said on the papers that it was indefinite. However, being a person that always wants to do things right, when I finished my standard treatment I asked the Hospiscare nurses about giving it up. They told me that was up to me, but I told them they were the ones that had obtained it for me. At the end of 2006, when the Hospiscare nurses said that I could be discharged from them, I wrote to the Department of Works and Pensions to ask them what I should do. I had a letter back saying that DLA was given not on actual illness, but from needs arising from that illness. I found it all very confusing and relinquished it. From what you and linali are suffering from, I would think that you are entitled to it, so I would fight on if I were you. What I do not know in this country is whether everyone diagnosed with cancer gets some help. I think you have to be informed, you will not be told of your entitlement, but it is up to you to find out about it. That is one advantage of having Hospiscare nurses, as they do everything for you and work with your GP. I found them good company and helpful. My husband used to go to their monthly meetings for carers and found that very helpful. I was even chosen to go to a special meeting at their offices to meet a group of fellow cancer sufferers and survivors, and a special Hospiscare representative to talk about ways of improving the services. Ironically one of the three Hospiscare nurses who visited me, ended up with breast cancer and had the same oncologist and surgeon as I had.
Looking at your own case, I can see that you have needs arising from having had breast cancer. If you are not able to use your right arm properly, you can say that you need help with shopping and housework. These are genuine needs arising from the breast cancer. If you have problems with your driving, that is also a direct result of the cancer that is another problem. To me that should be an issue. You need someone to drive you to town.
I was so glad to know that you had good care. It is obvious that with Dulcie she is being given a hard time. I think in this country we are suffering from too large a population and that the NHS is not able to cope. I had excellent treatment, but I think it is very much hit and miss.
Thank you for popping in to comfort Michael. He needs it at this time.
Thank you for your appreciation of the information you have been able to obtain on the thread. That is what it is all about. I do not think I shall ever forget the group of five that you were in going through treatment and how we did it all so methodically. You will remember Maria_Malta and bak94, christina1961, and mccrimmon324. You went through treatment with them and there was so much information, experiences and mutual support, that it was very fulfilling. With all five of you, it is behind you now and you are getting on with your life.
Wishing you all the very best, Bernie, and thanking you for your continual input and contribution to the thread.
Fond wishes
Sylvia0 -
Hello everyone
I thought I would post a blue ceanothus that is in our grounds. It is also known as the California lilac. You can buy tall shrubs or low growing ones. They are truly spectacular.
Best wishes
Sylvia
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Hello Michael
Thank you for your post.I was interested to know that you had homes in Northern Ireland and Brentwood, England. Brentwood is very familiar to my husband, Raymond, and me. Raymond was born in Essex and I was born in London. We went to Canada in 1977 for Raymond's work and we stayed there until November 1993. We then returned to England. Raymond, a chartered electronics engineer, was head hunted by Amstrad in Brentwood, Alan Sugar's company, and we lived in Langdon Hills around a nature reserve, until January 2002, when we retired to Devon. We liked Brentwood and went there often. We spent a lot of time in Brentwood library. We came to Devon because we found it was getting too hectic and crowded in the south-east. Chelmsford used to be one of my favourite towns. We also went often to the seaside town of Frinton, which is now in the top ten for places in which to live.
I was also very interested to know that Janette was treated at Queens in Romford. I know that is a relatively new hospital and very busy. My elderly uncle, now deceased, was diagnosed there with throat cancer, but referred to Barts Hospital, oncology department for a consultation. The treatment proposed was horrendous, so he turned it down and survived just ten months. That all happened nearly two years ago and it was awful to watch him waste away, unable to eat or speak. We were soul mates, talked all the time on the phone and his death has left a huge gap in my life. I waas wondering whether Janette was referred to Barts as it is one of the most reputed hospitals along with the Royal Marsden. I have a friend who is a nurse and works in cardiology at Barts.
I have heard of the drug Rituximab and I was not surprised to learn that it was rationed in England because of the cost. This is the enigma of this country. We are supposed to be the United Kingdom, but things seem so different in Scotland, Wales and Northern Ireland. I think there is discrepancy even within the counties of this country and the north and south. I do not blame you for opting for treatment in Northern Ireland. You probably got better care. What a stressful time that must have been having your treatment and then flying to England to go with Janette to get her treatment. I can understand that at Belfast City Hospital Janette was told they would have given her exactly the same treatment. The chemotherapy drugs are basically the same but I think we are always behind the USA. I know from this forum that the American women get drugs before we do and they have more thorough check ups than we do.
I was interested to know about the drugs that you had for your chemotherapy. I know that chlorambucil belongs to the same group of drugs as cyclophosphamide and they are known as alkylating agents. Cyclophosphamide is used very commonly with breast cancer. I had heard of rituximab and knew by the ending that it belonged to the group of drugs known as monoclonal antibodies. I was not surprised to learn that it was rationed in England. It was not so long ago that women with HER2 receptors were having to fight for the monoclonal antibody Herceptin if they had a HER2+ receptor.
I do think unnecessary surgery is bad for the body. I have read in the past that there was a body of opinion which thought that surgery in cancer could spread cells around the body. I know that now chemotherapy is often done before surgery, especially with a large tumour. I think that chemotherapy as it attempts to shrink the tumour must be killing off strays in the body. I did read once that morphine did harm in surgery and that you should ask for tramadol as an alternative. Who knows where the truth lies?
I can understand that you took medical retirement. I do admire the women on these threads that work through their treatment, as it must be very difficult.
Your part time research for IPSOS MORI sounds very interesting. I do hope you will be successful with the charity you want to start, as it will keep you occupied. They do say that time is a great healer, but everything is so recent for you that it will be very raw. I can understand that you want to move back to England to be close to friends and family. Will you go back to Brentwood?
As far as TNBC is concerned, we urgently need something to prevent recurrence, metastases or new primaries. They keep talking about success with trials, but nothing ever happens. There are so many different cancers, I believe over 9,000, that there will never be a magic bullet. We are told of lots of risk factors with breast cancer, but are then told they did not necessarily cause the cancer! Metformin, a cheap anti-diabetes drug, is being put forward as a possible preventive for TNBC. In the US, apparently, you can buy Metformin in the stores, and even get it for free! There are women on this forum that are taking it, but I do not know about UK women. I also remember reading recently about a possible connection between diabetes and breast cancer. There is so much information flying around about cancer that you do not know what to believe. Low dose aspirin and bicarbonate of soda have also been put forward as a possible way of dealing with breast cancer.
I think with breast cancer in general, good nutrition needs to be emphasised, and women told to eat simple diets of lots of fruits and vegetables, nuts and seeds, pulses and beans. There needs to be a move away from lots of meat and poultry and dairy foods in particular, because of the growth hormones. Processed foods should be a no-no and alcohol kept out of the diet. There should be an emphasis on getting plenty of exercise. I also think there is a connection between breast cancer and the birth control pill. Our western way of life is all wrong. Women need to inform themselves when diagnosed with breast cancer and know exactly what they have to face. They have to meet their medical team half way and help themselves.
You asked an interesting question about check ups and x-rays. It is quite difficult to answer. In England, when you are diagnosed with breast cancer, it seems to be fairly standard procedure to have a CT scan and a bone nucleide scan. At least that is what I had at the Royal Devon and Exeter Hospital. The CT scan will show you if there is spread and the bone nucleide scan will show you if there is spread to the bones. After treatment, chemotherapy, surgery and radiotherapy, you have the same two scans. Remember that these scans expose you to a lot of radiation, which in itself can cause cancer, as can the chemotherapy and radiotherapy. I suppose you do not have more scans during the years of check ups that follow because of this. It also may be because of cost. X-rays also expose you to radiation. I asked my oncologist about all of this, and she is a truly dedicated woman. She told me that they would do these scans etc. if you thought there was something going on and you were concerned. It was the same with blood tests. I asked her why I did not have regular blood tests at my check ups to look for cancer markers. She told me the test were only good for that particular day. In England I started off with three-monthly check ups that went to six-monthly after two years. These check ups are purely physical, looking for everything to be smooth to the touch. I have mammograms every two years, which seems to be fairly standard.
In the US, which is an insurance based system, they seem to have lots of scans and blood tests etc. I sometimes think they may be over tested and that this could be the cause of spread, recurrence or new primaries. There seems to be no perfect answer. You have anxiety over scans and waiting for the results and you have anxiety if you do not have them, because you cannot be sure what is going on inside your body. It is right that the most common sites for spread are the lungs, the bones, the liver or the brain. It is something that truly terrifies me.
That is about all for today, Michael. I hope this post helps a little.
Best wishes
Sylvia0 -
Sylvia,
I have been working so much that I do not have time to read every post I have missed, but I just saw your beautiful photographs and wanted to thank you! I love roses, too, and the Peace rose is one of my favorites along with the Crimson Glory and Tropicana. When I was a child I had a rose garden and as a young adult I had a garden of mainly white tea roses. You don't often see tea roses anymore in my area but the "knock out" roses are popular. I don't have time anymore for gardening but hopefully if I can get some bills paid down over the next year or so I will have more free time to relax. I seem to be recovering my stamina slowly, with one good week then a bad week. It has been over 100 degrees here at times and I work part of the time outside, so that has been difficult, particularly with the Tamoxifen which causes a little dizziness and hot flashes. Yesterday I worked 16 hours but I now have two days in a row in which to complete paperwork without having to leave for appointments (except for one appointment) so that will be helpful in terms of "catching up."
Best always,
Christina
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In Brentwood we had an apartment on London road. Brentwood was chosen because the children went to Brentwood school. When I met Janette she lived in Chelmsford and I lived in Battersea (I was born in Balham). I have always been very fond of Chelmsford and ideally I would like to move there.
Queens didn't refer Janette anywhere else. They belong to the Bart's led North East London oncology group. I have no complaints about the consultant or chemo unit staff, the care and staff on the wards were a totally different story. It can be summed up in word "appalling". When Janette relapsed Belfast had trouble putting an exact diagnosis on the biopsy, there was something unusual about the tumour and they asked Queens (repeatedly) for the original slides. After three weeks they arrived but were the wrong ones. Three further weeks and the correct ones arrived.
I was sad to learn of your uncle's death, what treatment were they proposing?
I was interested to hear that you had follow up scans after treatment. The only thing Janette got was a yearly mammogram. Also your comments on diet reminded me that Janette heard when she was diagnosed, that she should avoid dairy products and I told her that if she gave up dairy so would I. Janette lasted a month I did about nine months and I must say I felt very well.
Did you have any racial factors that lead to TNBC? Janette's mothers family are Greek Cypriot's and we thought that her fathers (he died when she was three) side were Jewish but when we started doing her family tree a few years ago we realised that they were English gypsy's. So, an exotic mix.
I think I will finalise the charity's purpose this evening and get the application in before I head for London on Saturday.
Michael
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Hello christina321
It was so nice of you to take the time to post and express your appreciation of the photographs. I was interested to know that you like roses. They are so very beautiful. I find that people here do not grow them as much as they used to. I love to look at the roses in one of our local nurseries.It is a pity that you do not have time for gardening at the moment with all the work you are doing, but I hope you will get back to it sometime, as it can be very relaxing and therapeutic if you do not overdo it. I find gardening very peaceful. On these threads I think it is very important to have relaxing posts to try to take your mind off breast cancer. There is so much pain and suffering with this disease that I sometimes feel so indignant that nothing new comes up. When will less harmful treatments be found?
I admire how hard you work and how you can look forward to having some more free time later on.
Try not to overdo it. I was glad to know you are slowly recovering your stamina. That is good news.
I find hot weather makes me tired. Here we go from one extreme to the other. We have had months of rain and very cool weather and suddenly it is warm and dry. People are out in droves on the beach and in the sea at Exmouth. There will be a lot of burnt skin this evening. I do not know how you are managing with 100F.
I do hope the dizziness and hot flashes caused by the Tamoxifen will diminish soon.
I know it takes a lot of time trying to keep up to date with all the threads on the TNBC forum. I do try to read them so that I know what is going on in other countries etc. I read the Calling all TNS but find it impossible to keep up with all the names. I did see that bak94 was going for a six-month bone scan. I took this to mean a bone nucleide scan. I do hope she will have good news. We do not get this kind of check up in the UK.
Look after yourself, Christina and pop in whenever you like, so that we know you are alright.
Best wishes
Sylvia0 -
Hello Michael
I was very interested once again to hear all about Brentwood. I do remember London Road and I remember that Brentwood School had a good reputation. I always liked Chelmsford and Raymond and I went there often. I would think it is probably the best place to live of the towns in Essex. Let us hope you get your wish to move there.I did remember about Barts and Queens and the North East London oncology group. I was glad to know that you had no complaints about the consultant or chemotherapy unit staff but that care and staff on the wards were not good. This seems to be a common complaint. I think there have been complaints about Queens. It was unacceptable that it took so long to get the correct slides from Queens. I wonder what was unusual about the tumour. I think the NHS is overloaded and comments I hear from people is that the staff seem to be lacking in care and compassion.
I would have thought scans post treatment would be very important to make sure everything is in order. Lots of things, apparently, do not show up on mammograms and there are a lot of negative views about mammograms. One of these is that frequent mammograms and being subject to radiation may be causing breast cancer. Last year, when I went for my regular check up with the breast cancer consultant surgeon, her medical assistant (a new one) examined my left, healthy, breast and said she was concerned about how dense it was. This started to make me feel very afraid. It was a Friday afternoon and she told me to go and make an appointment for a mammogram plus ultrasound for the Monday. I can tell you that weekend was very long. I went on the Monday, had the mammogram and was told it was clear. I then had to go for the ultrasound. Fortunately that was all clear. You still wonder whether anything has been missed, but I came away relieved. You hear many stories on the threads of women being diagnosed with breast cancer not long after they have had a clear mammogram.
As for my uncle's death, he was going to have to have facial surgery, which would have deformed him, all his teeth removed and long and horrendous surgery. He was told he would probably not be able to talk afterwards and be fed through a tube. All this was in addition to chemotherapy and radiotherapy. He said no to all of it right from the beginning. Even before the treatment the tumour at the back of his throat was preventing him from eating and speaking plainly. I came back from seeing him thinking that what I had gone through had been nothing in comparison.
When I was first diagnosed and my consultant told me that I should not have breast cancer, I asked her to tell me unofficially what might be causing breast cancer and she told me straight away that she thought it was connected to dairy products and the insulin growth factor (IGF) in them. I did not have much before but I do not eat any dairy products and have not done so for seven years. I have fresh unsweetened soy milk enriched with calcium.
I was interested in what you asked about racial factors that could lead to TNBC. I do not have any that I am aware of. I do know that TNBC affects more Afro-Americans than white women. TNBC affects about 15 - 20% of all women and of that percentage, more Afro-Americans and I think Hispanics are affected. TNBC is said to affect younger women more than older ones. I think I read somewhere that a special group of Jewish people are also affected. I come from a white family background and my maternal grandmother died of breast cancer with metastases at age 70. That was back in 1955, so I do not know what receptors she had. On my mother's side, she and her sister had no cancer. I have three female cousins on that side, but, so far, I am the only one to have developed breast cancer. I had an interview at my request about genetic testing, but was told I did not qualify because if genetics were involved I would have developed the breast cancer at a much younger age. I felt anxious on diagnosis because the other women around me were all being diagnosed with hormonal cancer. I feel that there is some connection between a lot of stress and the development of breast cancer.
There certainly is an exotic mix in Janette's family background. I do not know whether being a gypsy puts you at greater risk.
I hope all goes well with your charity and your trip to London. I forgot to tell you in the previous post that I went to Northern Ireland back in 1971 to visit one of my brothers who was teaching at Coleraine University and living in Derry while finishing his M Phil, which was entitled The Influence of Dostoevsky on Albert Camus. I enjoyed the trip and thought the country was beautiful.
That is all for now. Look forward to another post.
Best wishes
SylviaPS I was very much interested in the drugs you had. My information is that vincristine belongs to the same group of drugs as paclitaxel (Taxol) and docetaxel (Taxotere) and are known as antimitotics. It makes you wonder why, if they belong to the same group, they cannot be interchanged for the various cancers. The prednisolone is a steroid that is also used with breast cancer treatment.
All the best
Sylvia
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Hello Dulcie and linali
How is your week progressing? Pop in and let us know that you are alright.
Best wishes
Sylvia
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Sylvia
I went to University at Coleraine after my first chemo in order to try to shake of the effects of chemo brain, it was there that I was using the database where I discovered Janette. I was living in Portrush at the time.
You asked yesterday if I disobeyed Janette and researched TNBC. I am afraid I didn't and I bitterly regret that decision. If I had I would have appreciated the fear and stress Janette had and I would have made more of the time we had together instead of thinking all cancers were pretty much like Lymphoma.
Michael
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Hello Michael
I don't often post on this thread as I am not triple negative, but have long corresponded with Sylvia as we both had the same additional diagnosis of parathyroid disease.
I just wanted to let you know that Janette was a regular and well-loved poster on a UK site : bcpals.org.uk....(where she used the name of chatterbox!) - she was always so supportive of others and ready to listen to their concerns. She was a special person (as you of course know) and is greatly missed.I never had the pleasure of meeting her in person, although I almost made it to one of Dawn's get-togethers, which I believe Janette attended.
Your idea for a charity in her memory is wonderful and I wish you every success.
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Hello Sylvia
I am sorry not to have posted to you for a while - despite having already had two weeks of holidays, I seem to be as busy as ever!
I am going to my father's this weekend - but I will endeavour to send you a long catch-up post very soon.
With love,
Sam
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Hi Sam
I have been in regular contact with Gill from BCPals and I know Janette had lots of friends there and got much support, for which I am grateful.
Please pass on my best wishes to the group.
Michael
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Wishing you all a good weekend. The sun is finally shining here. Had a BBQ last night for Dave's birthday.
Sylvia, the pictures are inspiring, my garden is so not looking it's best. Could not do much last year and this year the rain has been so bad.
I grew up in Harpenden, Hertfordshire. All the years I have been living back here I have never visited the north.
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Hi Bernie Ellen,
Its great to see the sun at last and i think today will be fine too. I hope that it will help all my flowers that are soggy and waterlogged.
I am in the process of gathering together letters to look for a review of my invalidity claim. They are turning everyone down and I know that someone with advanced throat cancer was refused. I think it is because of a budget change that was introduced in Feb and is only coming to light. Prior to that if what I have read is correct, you could receive illness benefit until you were 66. You would be reviewed yearly I think. Anyone claiming since 2009 would remain the same but anyone becoming ill in 2010 would use up their 2yr SW stamps and be discontinued with the only option to seek Invalidity or means tested Illness benefit{allowance not sure exact term]. Many people living with cancer will be affected especially if the same assessors are using the same criteria for the Invalidity pension pre 2012. I am not 100% sure of these facts yet and have asked someone from citizen's advice but they also weren't clear on it. They are tightening up is all I'm hearing. Two other people at the centre have been refused recently.
I started wondering about the illness benefit because 2 people I worked with were off work for over 4yrs and I'm sure that they received money. I don't know why I am finding it difficult to verify this. There is something on the Social Welfare site which mentions the continuation of payment to those in receipt of benefit since 2009.
I wonder do you know anything about this? I feel that if it is so that it will affect those living with cancer and we do not want necessarily to be classed as "invalids " and under the current criteria would not be! But that is the only way to receive payment. The forms that the doctors fill in have no relevance to any SE or problems that we may encounter after treatment. I hope that this makes sense and that I haven't got the wrong end of the stick.
I never had feelings of anger throughout my diagnosis or treatment or even with the pain etc that I have but I am so angry that having been through treatment etc that I cannot live a life without certain stresses because I have no money!
Sorry for the long post. I have to write a letter this morning to support the review and I am not sure what to put.
After that I am going to forget about it for the weekend and get out into the garden with the cat and just savour how good life really is.
Thanks for caring
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Hi Sylvia,
I have had a busy week and have been at the centre nearly everday. Sadly we had 7 new women join us recently. One women called out yesterday, she is just beginning her chemo and just needed someone to talk to . I hope that we were of help to her.
We are having an awareness day at the sports fields in Ennis on 25th August. It is called ,WALK A LAP IN MY SHOES. An actress in an irish soap will be starting it off and then local sports stars etc, many who have been affected by cancer will participate through the day. In memory will be the first lap and then survivors and their families the 2nd. There will be info stands manned by ,hopefully, medical professionals.
On 4th august we have a consultant oncologist coming to the centre to answer questions and this will be done over a full irish breakfast or smoked salmon and brown bread. No wonder I can't lose the extra weight!
As I have said to Bernie ellen I am in the process of appealing the invalidity pension. I have to write a letter and I am finding it difficult.
To answer re the types of cancer. I mainly meet the women, the men have their own group. The two maintypes are breast and ovarian cancer. Some also do have bowel, thyroid,stomach and bone.
The sun and the cat are beckoning so I must go . Luna is going crazy I do hope she hasn't brought a feild mouse into the house.
Enjoy the Olympic opening ceremony
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Hello Michael
Thank you for your last post. This is turning out to be a small world. I was interested to know that you went to Coleraine University and now it turns out that sam52, whom I have got to know very well from this forum, and for whom I have enormous respect and fondness, knew Janette from her postings on bcpals.org.uk. This is a website about which I know nothing, but knowing how I am, my thirst for knowledge and a mind that is forever active, I shall probably be having a look. I did look up chatterbox7 on this forum but it does not look as though Janette ever posted. Of course, at that time, there was probably not much specific about TNBC. I think there was the thread about "not a typical triple negative", which I did post on and found most interesting. It went dead, but it was revived a little later on. It was not started until 2009.You must not blame yourself about not researching TNBC. Please do not have regrets. The one thing I have learned through this difficult journey called life is that regrets serve no purpose. Remember the Edith Piaf song "Je ne regrette rien" (No regrets). To get everything right we need two lifetimes. We would probably have different regrets!
Focus on the fact that you met Janette again, that you married and that you had good times together. I was thinking about it all last night and saying to Raymond that I do not know how we could have managed if we had both had cancer at the same time. Do you think that lymphoma cancer is easier to get through in general or do you think that you were just lucky not to have found it too awful? I did not have an awful time through chemotherapy but I realise that I was lucky. Once, in the chemotherapy ward, I saw a woman being really sick while she was hooked up to the pump.
That is all for now.
Very best wishes
Sylvia0 -
Hello sam52
I was so pleased to find your posts this morning. Please post as often as you like. I have said that anyone is welcome to post regardless of their receptor status, because we all go through the same procedures and the only difference is after this finishes, those with hormonal positive status go on to Tamoxifen, Arimidex etc. and those of us with negative status have nothing, for the moment. Your posts are invaluable and will certainly be of help to anyone viewing or posting.Do you still view the threads where we met and posted such a lot and if so what is going on? I am so busy with this thread that I have not looked in a while, but I might try today. I am going to try to find "not a typical negative - am I alone here?", which was started August 8 2009 by IcudaShuda. I did try to revive it after it went dead, but I am not sure what is happening with it now.
I do not find it easy finding threads. I was trying to find the high calcium one the other day.
What a coincidence that you knew Janette via the bcpals.org.uk site. Do you use it often and what is it like? I must admit, she sounded a lovely person. On this site do you post about all kinds of breast cancer? It sounds good that you have get-togethers. Is this an independent site created by Dawn or is it backed by a charity?
I do understand that you are very busy. I know that it is very difficult coping with everything alone. One of the neighbours in our apartment complex died on May 5th and I had been helping him for the past ten years. He was divorced, a cancer survivor after being near death, and incapacitated through MS since his thirties. He was 77 when he died. I helped him as much as I could. He was an inspiration to me when I was going through my cancer treatment.
I do hope you will have an enjoyable weekend at your father's and I look forward to a catch up post when you have the time.
Please be a frequent visitor to this post, as you a long term survivor and that encourages everybody.
I feel very concerned and angry at the toll breast cancer is still taking on women, not to mention other cancers. Every time I hear of someone dying in their 50s and 60s it is invariably cancer. Angharad Rees and Sally Ride, age 63 and 61, have both died of pancreatic cancer in the past week or so.
Thinking of you
Love
Sylvia0 -
Hello BernieEllen
You sound up beat in your post. I am glad to know you are having some sunshine. It always makes a person feel better. I hope you had a good time for Dave's birthday.I was so glad to know that you like the photographs. I am sure your garden will benefit from the sunshine. After all the rain, a dry period was badly needed. I love flowers, but cannot have them in the apartment because they set off Raymond's allergies.
I was very interested to know that you grew up in Harpenden, Hertfordshire. Again, this is a small world, as it is near to Essex, where Raymond and I spent so many years after returning from Canada. Raymond was, in fact, born in Essex. How long have you been back in Ireland? How old were you when you left Hertfordshire?
When I was in Northern Ireland to visit my brother, I liked Derry, but, above all, I loved the countryside. We did go in to the Republic and I found the people so friendly. We do have an Irish jockey in the family on Raymond's side, but he lives in Dubai.
I do hope you and linali will be able to sort out your invalidity benefits. Push as hard as you can and get help from the Citizens Advice Bureau. It sounds as though in Ireland you are suffering the same cuts as here in England. This country is in such a mess and the cuts are hitting the most vulnerable. It is absolutely shocking.
I saw that beautiful picture on the TNs about Friends Are For Ever. You are quite welcome to post it on here.
Have a good weekend and make the most of the good weather.
What has happened to Caroline? I have not seen her posting anywhere.
Best wishes
Sylvia0 -
Hello linali
It was nice to hear from you. I was glad to know that you had been at the centre nearly every day, because I think you find it very fulfilling.I was so sorry to hear that you had seven new women joining because of illness. Did they all have breast cancer? The number of cases seems to be getting worse. I would be very interested to know, if it is breast cancer, what the receptor status is and how old they are.
It is good that the woman beginning her chemotherapy had you all to talk to her and reassure her. Chemotherapy is definitely the most frightening part of the treatment, the longest and the most wearing. Patients need to know that they can get through it. I would be interested to know also whether newly diagnosed patients who need chemotherapy are still getting the same protocols as of old, or whether new ones are being tried. Are they still starting patients off with a combination of epirubicin, doxorubicin, cyclophosphamide, paclitaxel, docetaxel and fluorouracil. It seems they may be using the group of drugs known as platins, such as cisplatin and carboplatin.
Your WALK A LAP IN MY SHOES sounds very interesting. Tell us all about it nearer the time.
August 4th sounds like an interesting day, but perhaps fattening! I suppose a full Irish breakfast is the same as a full English one. I would love to be at your centre to be able to have the benefit of firing off questions to an oncologist. Make sure you ask a lot of questions. With reference to TNBC, why are they not making more progress and what is causing it? I feel I would have to have that banner "Where is the cure?" in evidence somewhere. I am feeling so indignant about all the deaths pain and suffering. Raymond thinks my headstone should say "She was so indignant!". I feel there is nothing wrong with indignation. In this country there are so many things about which to be indignant.
I was interested to know about the types of cancer that people coming to your centre have. I know that breast cancer is the most common but ovarian cancer seems to be on the increase. I was surprised that lung cancer is not there. I was told that primary bone cancer is rare, so I am wondering whether those with bone cancer have it spread from a primary cancer somewhere else.
Enjoy the sunshine and get plenty of vitamin D, but do not overdo it.
We are not that enthusiastic about the Olympics. We feel it is all for the benefit of the rich and will probably leave the country in even more debt. In a country like ours with a double dip recession and lots of people suffering, we feel this is all too much. The country needs to calm down. We have already had the Euro Cup and the Diamond Jubilee. People need to come down to earth. The next thing will probably be another "Royal" birth or wedding.
Wishing you all the very best, linali.
Sylvia0
