First warning is that if you are undergoing radiotherapy you must keep your weight stable (neither up nor down) or else the measurements for lining up the machine will be affected.
Something to cheer you up is that improved posture and a massage after a break in treatment will make you look much slimmer. When everything is hurting and you haven't got a comfortable bra etc, you tend to develop a stoop.
Straightening up will probably make you regain an inch in height and flatten your stomach. So keep stretching upwards, drop your shoulders and roll them back a little (you are possibly a bit hunched).Tuck your bottom under.
Chemotherapy and radiotherapy release a lot of toxins into your system because they break down actively dividing cells (mainly cancerous cells but also some good cells disappear as well) and these tend to bind with fluid making you look fat. A massage will help eliminate a lot of excess water.
Increasing your fruit and vegetable intake has a mild diuretic effect without adding too many calories (just stay off regular portions of very sugary fruits like mango and papaya).
After the quick fixes, when you are ready for real weight loss, try to switch to a low GI, low GL diet. Eat from a smaller plate so you are more likely to eat correctly sized portions. Food eaten while doing something else tends to be forgotten about. Eating the leftovers on your children's plates aren't free calories either. When you eat, make yourself comfortable, eat slowly, chew everything well and enjoy it.
Provided there is nobody around to see it, the easiest way to increase the amount of exercise you take is to work out a few simple movements you can do while performing mundane tasks such as brushing your teeth.
Cleaning the bathroom tiles can result in much the same movements as "incy wincy spider" up the wall that we were all told to do AND you have clean tiles. Housework burns a lot of calories and you can dance with your vacuum cleaner if you want!
Slimming Clubs work for some but wouldn't for me. Slimming Clubs are mainly about peer group pressure. You have to learn to do it for yourself if you eventually want to leave the club behind. Also, some of the clubs build dependency by pushing foods marketed under their name with points values etc. You want to be eaten healthy home cooking with your family.
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It was a piece of EU legislation that stopped employers giving rolling temporary contracts to avoid employees receiving the same terms and conditions as permanent employees. As you have been on rolling contracts for a number of years, you appear to be someone who can benefit from this.
Your union hasn't been much help to you to date and April is not far off, so I recommend you visit the Law Society website to find lists of employment solicitors in your area. When you have a checklist quiz the ones that seem suitable about their relevant experience, success rate winning cases, fee rates etc. You are likely to have this heard in an Employment Tribunal which would mean no award of costs even if you win. Position better in higher courts.
Don't draw you pension just yet if you can possibly avoid it. It would be much harder to sort out compensation if you have drawn benefits. With luck, they might decide upon a date in the past when you should have been given a permanent job with full package backdated.
When I was well, I used to be an FCII (Fellow of the Chartered Insurance Institute - Pensions branch),an APMI (Associate of the Pensions Management Institute) and had the CII's Financial Planning Certificate. I'm rusty and no longer able to give regulated investment advice (because I let my memberships lapse and no longer work for a regulated firm but I do try to keep up with changes.
Legally can give you factual information only, so you might benefit from seeing a pensions advisor also.
It is worth the hassle if you are told there is a relevant charity.
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I dom't think that being a patron should be a job for life no matter how useless you are or if you become an enbarassment.
I had wanted to keep personalities out of it while finding out the removal process. When I didn't get a proper response, I gave examples of instances where patrons had obtained percuniary advantage through their position. Why were not more people shocked that Tony Blair MIGHT have used BCC premises for free? I say "MIGHT" because I was not given an answer at the time. BCC could rectify this now?
BCC can, with my blessing, allow their premises to be used by any mainstream party provided they pay the going rate. Would draw the line at being associated with UKIP, BNP,IRA or other unpleasant political parties.
Did anyone dig up The Guardian article by Joan Bakewell that offended so many of us? I didn't keep a press cutting, but surely BCC did?
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I do understand trusteeship, but still feel that patrons can somehow avail themselves of certain pecuniary advantages because they are patrons. In Cherie Booth's case, I remember than Tony Blair was allowed to use BCC's lecture room for press conferences before the last election. I recognised the room because I had been there. When I asked if he was paying a commercial rent, I got no reply but next day, the pink podium was covered in red cloth (which didn't stay put).
Joan Bakewell once had a teleconference with several of us who had secondaries that she used as the basis of an article she wrote for the Guardian! The issues we discussed were not covered. Instead she described us as a bunch of silver surfers and said it was wonderful that we were coping so well with new technology. The actuality is that Joan herself was the only person taking part who was over 50. Secondaries strike too many of us before we even get to the age when we are entitled to a routine mammogram. So how did that Guardian article help us? We felt used and the only person who benefited was Joan.
Geri Halliwell was photographed smoking on several occasions, which is something you should not do if you are seriously trying to avoid breast cancer.
So how does someone become a patron? Do they ask for the job? Who decides if they get it or not?
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In the past, patrons of a charity were self appointed and accountable to nobody, but that was fine. For the most part, it was their own money they were spending and the charity would not exist if they had not set it up.
Today, things are different. Patrons are apparently controlling vast amounts of money that they did not contribute. So, how are they chosen and appointed? What is the job description? What happens if they fail to fulfil their responsibilities or their behaviour becomes an embarrassment? A charity must have a good imagine if it is to survive.
For those who are interested, our current patrons are Cherie Booth, Joan Bakewell and Geri Halliwell.
This is not a personal attack on anyone; just a desire to find out how these things are done.
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Admire your intentions, but don't forget about the Data Protection Act.
Unless you are happy you can comply, best not to do it or encourage BCC to do it on your behalf.
To be frank, it won't achieve very much. Everyone is an individual and finding out what happens to most people doesn;t really tell you what your own experience will be.I frequently see posts asking questions such as "how long before my hair falls out?" or "how long before my hair grows back?" and the answer has to be who knows. Some people get on well with a cold cap during chemotherapy and just experience a little bit of hair thinning, while others go nearly bald.Some have terrible skin problems during radiotherapy.
Most will be happy to endure short term problems if the treatment is working.I think you just need to be aware of the range of possibilities (and factsheets are best for that) so there is no alarm about symptoms and you have some guidance about what to do to help yourself.
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DLA on its own won't automatically qualify you for any help. I have been receiving DLA for many years as I have secondaries including bone mets and these became so bad in one hip that I needed a hip replacement.
However, because I do not receive any means tested benefits, I am entitled to nothing.
I was a higher rate tax payer most of my working life, so I certainly paid enough into the State system, but all I get back is Incapacity Benefit and Disability Living Allowance (and initially I had to fight for that).
I have equity based savings that have, like almost everyone else's dropped a bit in value recently, so hence,I choose not to disinvest. These are turned into a notional income stream and added to my real income and suddenly I'm rich!
I won't be signing the petition because it was not comprehensive enough to include all affected cancer patients.
What efforts is our patron Cherie Booth doing on our behalf here? Perhaps she forgets her responsibilities as patron when it conflicts with her loyalities to the Labour Party!
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I agree with you. I have secondaries but do not feel that I am likely to die in the near future, so will not be posting in this forum just yet.
When I really do feel my time is up, I don't want to hear from anyone who doesn't already know me well and that communicate should be made privately and directly.
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I have never experienced "cruelty" and doubt if many people have.
I am very firmly against anyone handing over their applications for benefits to a Macmillan Nurse to fill out for them. They are your applications with your signature at the bottom. Get advice from a Macmillan Nurse by all means, but don't let them take over.
I always filled out everything myself and the only benefit where I had to appeal was the Mobility component of the DLA after I had secondaries in my bones, causing walking difficulties. I was originally told I'd get nothing. I said their questionnaire didn't bring out the nature of my problems,described them in practical terms and said I would exercise my right to appear before a tribunal to convince them. Next letter gave me full rate of Mobility component backdated.This in turn gave me an automatic right to a Blue Badge.
I really don't think a Macmillan Nurse or anyone else. would have done any better than I did myself. I was also happy that I had always been 100% truthful and had no fears of anyone disputing anything I'd said.
We have breast cancer, not brain damage. I accept that some people need more support than me with form filling but you should be involved as much as you can.
I went through a medical after my primary treatment and found the doctor very sympathetic and reasonable. I told him I had organised myself a new job with a large firm who had previously employed me a few years back, but it wasn't due to start for 6 or 7 weeks. I said I wanted to work, because Incapacity Benefit or Job Seekers Allowance wasn't enough to support my usual lifestyle (which included an independent school for my daughter)and I was a lone parent since by husband had left us. I said wasn't keen on being bullied into taking a different job a little earlier by the Job Centre. The doctor said that sounded very reasonable to him and he'd take his time returning the papers which would give me the delay I needed. The same doctor had been very tough with the person in before me. who was claiming to have a bad back.Maybe I was better treated because I didn't lose my temper and calmly answered every question?
My view is that there are lots of people in the benefits system who will help you if they believe you are genuine. However, they have to get tough with anyone they suspect is workshy. It is their job to get people back to work or off benefits if they feel they are not making reasonable efforts to find work.
While going through primary treatment. someone in the Job Centre told me how to maximise the time for which I received benefits as I could only claim on a Contributions basis. She told me to claim Job Seekers Allowance to begin with, while going through primary cancer chemotherapy treatment and then switch to Incapacity Benefit when going into hospital for surgery.
I've had no other requests to attend medicals other than the one after my primary cancer treatment ended. I don't think that it was unreasonable to call me in for a medical. I was capable of working and did take up the job I described.
As I'm now terminal, so asking me to attend a medical would be inappropriate, but it won't happen.
Sorry if this is not what you want to hear.
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I believe there is new thinking about the advisability of having a double mastectomy to avoid breast cancer. The alternative theory is that the mastectomy doesn't stop you getting breast cancer; it just appears on the chest wall instead, behind the reconstructed breasts where it is more difficult to spot.It sounds plausible to me but I'd hate to be the one having to choose which theory to believe.
All I can say is,ask lots and lots of questions and do a lot of internet surfing to see if you can find out more, before making a final decision.
Best wishes what ever you decide to do.
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It DOES get my back up everytime BCC archive a lively discussion simply because it makes them feel uncomfortable.
Archived material doesn't completely disappear: just becomes harder to find and of course, newbies who didn't see it the first time, won't even think to look through the archives..
Suggest you look for more on similar lines by checking out "Topic: Clarrissa Luard (deceased) - a former Mrs Rushdie" in archive 1996
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There isn't even a remote chance of a wholly accurate storyline about breast cancer, in Coronation Street or any other soap opera because we've never seen one yet!
Even the production teams for Casualty and Holby City make mistakes despite appointing medical advisers.
I personally disapprove of any in depth discussion of breast cancer while the small children of breast cancer patients might be watching. The 9pm watershed will provide very little protection during school holidays when children often have later bedtimes balanced by later rising times.
The patient needs to assess for themselves with perhaps help from suitable medical advisers, exactly what they say to their children. I opted for giving my young daughter simple but accurate replies while I was going through primary breast cancer treatment and she seemed happy with that.
When I was diagnosed with secondaries, she was obviously older and had a better understanding of how truthful answers are not always complete answers and that I had to a certain extent,shielded her from worrying.She told me I made the right decision then, but she wanted fuller answers this time. Every child is different and I took my cues from knowing my own child, her reactions to what I'd said and to a limited extent,my Psychology degree.
I don't watch Coronation Street and won't be making any special effort to watch it because of this storyline. Maybe I'm not feeling public spirited enough, but I've done my fair share of complaining for the year (my complaint about The One Show fell on deaf ears) and I want to relax and unwind this Christmas.
I may not even be in this country as I often go away at Christmas seeking a warmer climate (which helps my bone pain) and a good spa (because in the UK you have to lie through your teeth to get much more than a manicure if you have cancer in your medical history).
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Re: Sad & Frustrated at this disease
I'd like this made an active thread again, so those more recently diagnosed as Stage 4 can see how far adrift the Secondary Taskforce was, in relation to meeting our needs.
Don't keeping telling those with Secondaries what is good for us. Let us tell you what we believe to be the priorities.
So, we want among other things:
(1)Proper recognition that we exist and statistics to back it up
(2)More support against delays / bans created by NICE
(3)Events planned specifically for those with secondaries so we can meet those with similar problems and continue to give mutual help and support for free
What we don't want is:
(1) Money squandered on unwanted emotional support from professionals
(2) Automatically being given Keyworkers to help us (because some of us are more than capable of looking after ourselves).
From someone who always felt she was on the "naughty table"!
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There is no such thing as the "All Clear" as has been said several times in several threads. It is such a shame that too many people who should know better keep talking about the "All Clear" after 5 years without recurrence.
Wendy Richards (now deceased after secondary breast cancer) used to talk such nonsense and Trisha Goddard and Amanda Mealing have come in for criticism for making similar comments as if breast cancer was something they had put behind them.
The improving 5 year survival statistics only require that the patient be alive, not alive and well. I was part of the improving 5 year statistics but had secondaries.
Your prognosis will be dependent to some extent upon the results of the oestrogen and progesterone receptor tests, HER2 test and whether or not you already had some spread to the lymph nodes.
My advice is to take what action you can to protect yourself and family (e.g. wills, trust funds for children,insurances etc.) and then when you've done everything you can, try not to have it occupying your mind all the time?
You may be one of the lucky ones or you might not.
Even if you get local recurrence, regional recurrence or even secondaries, there are treatments available and you are not necessarily facing a quick death. Although I have secondaries, I've outlived median life expectancy by several years and still show no signs of dying soon (but I'm still officially terminal and not in denial).
Good luck and I mean that.
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Yes, front opening PJs or nightdress is a good idea. Forgot about that one! Also make sure the sleeves are roomy for feeding drips through them, access for testing blood pressure, taking blood samples etc.
Femfresh wipes are gentle and might be useful but less sure about most other wet wipes and cooling sprays because these often include alcohol which is drying anyway and certainly shouldn't go near a wound. Check the label before buying.
Another thing that ocurred to me later, was the dreadful smell from all the bedpans being used in a shared bay. Many painkillers make people constipated and then when they can empty their bowels, the smell is......
Spraying air freshener isn't tactful and the nurses would probably. quite rightly, tell you off if there is anyone astmatic in the bay. Consider bringing in some pot pourri or some light toilet water (which of course you are only spraying on yourself).
Sorry to hear you are without hair as well. How did you nails cope with chemotherapy and radiotherapy? If these suffered as well, consider bringing in some manicure products and give them some TLC.
Good luck in hospital.
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A lot of this will apply to anyone going into hospital.
FOOD You need lots of extra food to compensate for the cheap nasty food provided in an NHS hospital. If you have had any kind of surgery, you clearly need a high protein diet to help you repair. Most hospitals will agree to you taking in a small quantity of yogurts, cheese etc. which can be kept in their fridge. You can almost rely upon it being the middle of the night and there being little available apart from white toast, when you stop being "nil by mouth" after your operation.
TOILETRIES lots of very gentle products to wash with when you get the chance such as Baby "Top to Toe"wash which can be used as shower gel, bath foam, hand soap, shampoo etc. You will probably need a friend or relative to sponge you because the nurses won't find the time and you won't be able to do much by yourself initially. Dry shampoo is useful for freshening up if a normal shampoo is difficult.
CLOTHES I had much less surgery than you when I had my primary cancer treatment (Lumectomy and removal of lymph glands under one armpit where I had had a tumour before chemotherapy zapped it)but am someone who has a lot of experience of surgical wards since. Even with my limited primary surgery, putting on clothes was difficult and I was glad I took someon's advice to buy some soft,very stretchy, seamless, step in bras that are pulled up into place. ou don't lnow in advance where you will be sore and swollen, so any normal bras you bring in are bound to be wrong. A few of your own nice soft towels so you don't have to use rough washed up NHS towels would also help. When your skin is sore and sensitive, you will notice the difference.
MOBILE PHONE AND RECHARGER Check if these are allowed.
READING MATERIAL Lots of hospitals have recently thrown out all books and magazines as part of their MSRA deep clean, so don't rely on there being much in the hospital.
STATIONERY Make sure you have stationery to write a few letters you've been meaning to send for a while. A pad of thank yous for any big presents or special help you get while in hospital. Formal paper to note names of anyone rude and uncooperative, examples of contract cleaners failing to abide by proper procedures to avoid cross infection, anything said about your treatment that you might want to recall precisely at some point in the future.etc. Your address book!
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I agree with Belinda.
I remember when I was diagnosed with secondary spread being told I would only be receiving palliative care. The only compassionate thing said to me was that they would ensure I suffered no pain!
I got myself referred to the Royal Marsden by my GP. The Royal Marsden made my local hospital give me treatments that they wouldn't otherwise have given me.
To survive as long as possible (I have lasted longer than median life expectancy after a diagnosis of secondary breast cancer) you have to do a lot of research by yourself, push for anything you think might help you and develop a tough skin because of all the health professionals you will be upsetting.
I got my hip replacement by turning up at A&E when my hip was particularly painful and became an emergency admission. The orthopedic team on duty that day said it wasn't a question of would my hip fracture as when would it fracture and they'd prefer to replace it before the fracture in calm circumstances.
Don't give up just yet.
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Agreed, if your breast cancer is Oestrogen Receptor Positive (ER+) you should avoid rich sources of phytoestrogen such as soya products.
I can't see any harm in a small amount of soy sauce when making a stir fry (because the overall concentration of phytoestrogen will be low)but I'd avoid large quantities such as you might obtain from tofu dishes.
Remember all fruit and vegetables has some phytoestrogen and therefore we cannot exclude it completely from our diet without losing the benefits of our "five a day" etc.
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From what you've said, you were not put in a position to give informed consent and can therefore sue. I suggest you find a solicitor near you with appropriate experience.
There is a 3 year time limit to sue. The solicitor advising you will bring the action against the Primary Health Care Trust, the surgeon etc. In fact, anyone who might be held responsible for all or any part of your injury.
There are loads of adverts on day time TV offering to take injury cases on a "no win,no fee" basis which might be useful if you lack the funds to pay in the usual manner and do not qualify for legal aid.
I suspect you are not talking about disablement in the sense of being able to claim Incapacity Benefit or Disability Living Allowance? I cannot at present envisage how your injuries would stop you working, but correct me if I'm wrong.
With sincere sympathy
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