Calling all triple negative breast cancer patients in the UK
Comments
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Hello Mary,
Thank you for your interesting post. I am always glad to hear from you. It is good that you will be five years out from diagnosis next February. I have had a very busy time today, but tomorrow should be more relaxing so I shall answer in more detail then.
With adagio posting it seemed almost like old times.
Love.
Sylvia xxxx
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Hello adagio,
It was so nice to have you back on the thread and to know all is going well six years on.
Thank you for your kind words about my work on the thread. It is all worth it so long as I know it is helping.
Raymond is making good progress and these iodine patches on his face are working like magic!
It is good to know that you are almost six years out since diagnosis. I know that you take care of yourself.
Have you any plans for the autumn and winter?
Love.
Sylvia xxxx
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Hi Mary,
Treatment began on Thursday morning. One down only five to go.
No Benadryl was offered, though I've noticed that it's often used in America and Canada. Chemo only lasted for one and a half hours and the infusion part was surprisingly easy.
You obviously need another vacation in Alaska just so that you'll be in the right time zone occasionally. Water and phones, watches, cameras just don't mix, no matter how quickly you rescue them. I've always thought that the'waterproof' word was a big fib.
Take care,
Gill X
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Hi Gill,
Glad you've started well. People who'd never been in a chemo unit didn't get that it was just me in a comfy chair, reading and (some weeks) being given sandwiches.
I haven't heard of anyone being offered Benadryl here and wouldn't have wanted it anyway, what with the reading, It's not as if there's any discomfort.
Did you try the cold cap?
Susie
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Hello Sylvia,
All went very well with the treatment until 8.00pm when I began vomiting and couldn't stop. Phoned the Acute Oncology all day service, as instructed and was told to pack a bag and get down to the Acute Medical Unit for IV anti-sickness and rehydration. The AMU staff met me at 1.00am and another Acute Oncology admission (with a raised temperature) without much enthusiasm. No beds, go home and call a GP. We both stood our ground and ended up waiting in a wheelchair in a cold corridor on public view for the next three and a half hours. Didn't see a Doctor until 1.00 the next afternoon and she came down from A&E to organise rehydration. Took 8 hours to find a doctor to organise anti- sickness infusion. Apparently there was a mix up in my notes and I'd been forgotten about. I suspect a disconnect and some tension between Oncology and Acute Medicine.
I'm fully recoverd now, but dread the next time as I really don't want to find myself back in Acute Medicine ever again. Felt very unsafe.
An Oncologist visited to ask what had happened. I should have had anti-sickness medication to take before the chemotherapy. None was offered and none before my next session either, so I'm chasing that up today, though no-one has answered the phone so far.
The cancer hasn't left me in despair at any stage, the Hospital has done so at every stage. Special Measures is a meaningless label unless the Trust steps in with solutions, and quickly.
Rant over.
Love,
Gill X
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Hi Susie,
Congratulations on waving goodbye to radiotherapy. No more dingy hospital basements for you. Hope everything else is plain sailing from now on.
Couldn't agree more with your thoughts on well meaning people who tell you that courage and a positive mindset will pull you through. They have no idea and I have to say that what has turned me into a fighter has had far more to do with my battle to get the treatment I needed than positive thinking. The fact is, you just have to keep on keeping on, as it's the only way out. Hope my temper calms down a bit once this lot is over. Poor husband.
Enjoy your first hospital free week.
Love,
Gill X
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Hello Gill,
Thank you for your post. I have been thinking of you and wondering how you were getting on. I must say that I am completely shocked with all that has been happening to you. I cannot understand why you had that vomiting when you were back home after the treatment. Anti-nausea medication is supposed to go in with the drip that is giving you the chemotherapy drug. That is what I was told and that is what was given by the chemotherapy nurse. I am not quite sure what is meant by giving the anti-nausea meds before the chemotherapy, unless things have changed. As soon as the chemotherapy session is finished you need to do a lot of drinking water and to keep that up during all of the chemotherapy journey. You should have been given anti-nausea meds etc. in tablet form to take home and to take for the first three days.
It is beyond belief that you would be told to get to the hospital and then not be given quick emergency treatment and that you were told there were no beds and to go back home and call a GP.
You were right to stand your ground but it was definitely not right that you did not get to see a doctor until 1 pm the next afternoon to organise anti-sickness infusion and organise rehydration. All this smacks of negligence to me and totally unacceptable.
I was so glad to read that you are fully recovered now but of course all of this will have made you apprehensive about the next chemotherapy session.
I do hope you will be able to get this sorted out before the next session and that it will all go smoothly. Perhaps you could explain what you mean by taking anti-sickness medication before the chemotherapy, because my experience as I said was to have it all done through the drip at the same time. How long before is "before"?
Before your next session, you will have blood tests and if there is anything wrong with your blood test the medical team will not go ahead with your chemotherapy. In my own case, I organised, through my GP surgery, that a District Nurse would come the day before my chemotherapy appointment, take blood, send them straight to the hospital and the results would be there when I arrived. If all was fine only then would the chemotherapy drugs be made up at the hospital pharmacy. I was very lucky as my bloods were always in order.
As I have said before, some patients have problems with low red blood cells and have to have transfusions, and some have problems with low white blood cells and have to have treatment. I thought it was standard now for patients to take home Neupogen medication that they can take to avoid being hospitalised with low white blood cells. If that were me I would be asking all these questions so that you next session goes smoothly. As Susie said so well, the image of someone going through chemotherapy should be of a person sitting comfortably in an armchair while the infusion goes on and they can be quietly reading or munching on a sandwich.
It is so easy to see what all the cuts in the NHS are doing to the hospitals.
With Jeremy Hunt in control I do not think the NHS is in safe hands.
Make sure you keep well hydrated and try to eat small, healthy meals. I have seen bottled water in Boots called Smart Water, which apparently has all the electrolytes in it that help to rehydrate the body. However, going through chemotherapy with a depressed immune system I do not know how safe plastic bottles are. You can get packets of electrolytes at the pharmacy to add to water.
Please let us know how we can help you to get through all of this.
Love.
Sylvia xxxx
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Hello Mary and Adagio,
Just to say many congratulations, Adagio on being six years out and Mary with her clear mammogram and blood results. I think that so many of us on this thread rely on the good news here to keep us focused on the light at the end of the tunnel. I know that none of us come out unscathed, but so very many of us do come out to enjoy just getting on with stuff again.
Keep well,
Gill
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Hello Mary,
I just wanted to say that Raymond is making good progress and his face is looking fairly normal thanks to the iodine patches.
I was interested in what you had to say about your blood test that showed low sodium. It could be that you are drinking too much water and that it is somehow affecting the kidneys and too much sodium is being flushed out.
I was glad to know that you will have to see your oncologist only once a year since you will reach five years since diagnosis next February. Congratulations on that. Here it seems to be that after five years you are discharged from the hospital, especially those with hormonal breast cancer, but of course they then go onto five to ten years of anti-hormonal medication, which has a lot of nasty side effects. I would hate that. I stayed with my breast cancer surgeon for five years, but ten years with the oncologist. I do not know how I compare to other patients here with triple negative receptors because all those around me had hormonal receptors.
I got on very well with my oncologist and she always knew that I was doing the absolute maximum to stay healthy, so she may have kept me on as a study in triple negative because I had originally been told it was a poor prognosis.
Like you, I do not take anything for granted, as I have read that cancer can come back even after twenty years.
As for flu shots, I do not know what to say. I do think GPs are definitely pushing them. In my surgery the small waiting room is full of adverts for flu shots and I think there is a lot of scaremongering. The whole wall is about making people aware of vaccines, but I think a lot of it is frightening people into having them. There are adverts about shingles and all sorts of things. In addition, there is a television screen with the same kind of adverts going round and round! We are becoming a brain-washed nation. I switch off when anyone starts up about statins. The side effects are unbelievable and statins, like steroids, cause type 2 diabetes.
It has gone very cold here and we are having deep frosts. Tomorrow is Halloween, which I think is a lot of nonsense.
Today is our wedding anniversary and we have been married 42 years. We do not do much in the way of celebration. Unfortunately October 30th is also the date of the funeral of my elder brother, Ken, who died very quickly of cancer back in 1995.
I have received another email from Chris Woollams but I have not had time to read it yet.
That is about all for now.
Love.
Sylvia xxxx
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Hello Sylvia,
A friend in Canada was given anti-sickness meds to take on the morning of her chemotherapy, prior to the infusion and I seem to remember being told the same at my first Oncology appointment. I've just spoken to my Oncology nurse and she says that it isn't necessary, but that I've been prescribed a very large dose of anti-sickness medication to be give with my first infusion next time and this should make it easier. I was given anti- sickness medication to take at home, but my vomiting just wouldn't allow time for it to work. Apparently, I did have a small dose of anti- sickness with the first infusion, but the Oncology nurse wanted to see if I'd cope with that rather than giving me too much.
I asked if I could just wait it out next time, rather than call Acute Oncology. Then perhaps I could just go in the following morning and sit in a treatment room to be rehydrated and so save a bed. However, I do have to call the next time if the same thing happens as the chemicals need to be flushed out of my system.
The Oncology nurse seems to think my large dose of anti-sickness medication will solve the problem.The Oncologist who visited me on the Acute Medical Unit did say that FEC tended to cause sickness in many women, but FEC was a curative for breast cancer. I did ask for aggressive treatment and am now a third of the way through these infusions. The T part comes with other difficulties, but sickness isn't one of them. I just need to carry on and after all, I feel completely well today.
The NHS needs a great deal more money and this needs to be spent a lot more wisely than at present. Privatisation should never be seen as an option, yet it's sneaking in through every crack in the system. How can for profit organisations, whose first duty is to shareholders ever look like the way forward?
Take care,
Gill X
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Hi Gill,
For every cycle, I would have anti-sickness meds infused before the chemo, as well as two lots of pills to take home, plus steroids. I'm glad that you are so good at standing up for yourself as it sounds as if you need it. We're kind of brought up with the 'doctor knows best' message and I wish that were still the case.
I am in hospital again this week, as it happens, to have the first six-monthly infusion of Zometa so that if the cancer does come back, it will find it harder to spread into the bones. Shouldn't take long, though.
Susie x
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Hi Susie,
I'd forgotten about the Zometa. I'm being given it every six months for three years, I expect it's the same for you. Hope there are no side effects.
The days when Doctors knew best are long gone. They really need to listen to their patients and understand that many of us are now more than capable of doing our own research. The Guy's Oncologist recommended by Flora was so good at listening and explaining. He was completely prepared for the consultation too and knew my pathology. I know my consultation was private, but most of his work is NHS. Wish evey Doctor was so committed and every cancer Centre so well resourced.
Talking of Flora, I keep wondering how she and her mother are coping. Not an easy decision to go back for more treatment after all the problems.
How are the nails by the way?
Take care,
Gill
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Hi Gill,
I think it'll be a while before the nails are back to normal. The hardener does help, if only to remind me not to nibble on ragged bits.
Yes, three years of Zometa. Also gearing up to start the five-year 'add aspirin' trial, which I want to do as it's high time a proper study was made of whether it helps prevent the recurrence of cancer. I should start in about a month and will only have to touch base occasionally.
Susie x
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Hello Sylvie i'm back un Colombia since 29 of agost. I'm working since then. It is really hard for me. I'm always feeling tired.
I'm glad your all Good and keep in touch. Is really Nice ti came here and meet you.
Abrazos
Marias
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Hi Susie,
I'm going to look into the aspirin trial. I've heard of the possible benefits.When I was a child, aspirin was just for colds and headaches, but it does seem to have so many uses now.
I've decided to ice my nails for the 'T' part of FEC T as some research shows benefits to nails and neuropathy prevention. Not going to sit with my feet in bowls of iced water for anyone though, bags of frozen peas at the ready!
Love,
Gill X
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Hello Gill,
I do hope all will go well for your next infusion. You should not have to go through all that again. Listen to your oncologist as too many differing opinions will lead to confusion. Keep well hydrated and make sure you do this before and after your infusion. You should be able to arrive at the chemotherapy unit, get sitting comfortably, have your infusion and go home. Drink plenty of water, take your medication for the two or three days, rest, start looking forward and you should gradually feel better.
I agree with you about the NHS. We do not want a health system based on making profits. I think the 1948 NHS has to be one of the best things the Labour Party did for this country. No one should make money out of people being ill. When it was introduced medical procedures were fairly simple and they are now very complicated and costly. Cancer drugs are hugely expensive and I think cancer treatment has become very political. There is abuse and overuse in the NHS and I think patients and doctors need to respect it more and be aware of the cost of everything. When I was going through my chemotherapy I did ask how much my drug treatment was costing the taxpayer and at that time, 2005/6, I was told my drugs would cost £22,000.
For the moment, concentrate on getting trough the FEC treatments and do not think about the taxane drug to come.
I do agree too that doctors need to listen to patients and remember that there is so much more medical information available now and that we do not come to them with empty minds and that it is our decision whether we take their pills or not.
Keep positive, be strong, be optimistic, keep that hydration going and keep relaxed.
Love.
Sylvia xxxx
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Hello Susie,
I read what you posted to Gill and I just wanted to say that I agree with what you said about we have to stand up for ourselves when we are dealing with doctors. I have always done this and feel that I should make the decisions about what is done to me and what I take into my body.
I do hope all goes well with your first six-monthly infusion of the bisphosphonate Zometa, which is a brand name for zoledronic acid.
I know you are an informed person so I was just wondering whether you know about the side effects?
Do you think that this bisphosphonate infusion is now becoming standard as a cancer preventive? I know plenty of elderly women who have had this infusion but it has been for those with severe osteoporosis.
I know that it has been used for secondary breast cancer for some time.
We aim to keep up-to-date with everything on this thread so all new information is welcome.
Thinking of you.
Love.
Sylvia xxxx
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Hello Gill,
I was interested to read that you are also on Zometa, the brand name for the bisphosphonate zoledronic acid. How long have you been taking it? You might want to read up the side effects.
Like you, I have also been wondering about Flora and what is happening with her mother.
Love.
Sylvia xxxx
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Hello Marias,
It was a lovely surprise to find your post on the thread this morning. I have been thinking of you a lot and hoping that you were well.
I was interested to read that you have been back in Colombia since August 29th and that, since that date, you have been working.
I can understand that working must be hard because of the tiredness. I remember how much you have been through with the breast cancer and the thyroid cancer. Is that now behind you and are you slowly making progress?
We have some new patients on the thread and you will get to know them if you are not too tired to post. Mary and adagio will be glad to see your post.
Sending you love and best wishes.
Sylvia xxxx
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Hola marias
Fue una grata sorpresa encontrar tu publicación en el hilo esta mañana. He estado pensando mucho en ti y esperando que estuvieras bien.
Me interesó leer que has regresado a Colombia desde el 29 de agosto y que, desde esa fecha, has estado trabajando.
Puedo entender que trabajar debe ser difícil debido al cansancio. Recuerdo lo mucho que has pasado con el cáncer de mama y el cáncer de tiroides. ¿Está eso detrás de ti y estás progresando lentamente?
Tenemos algunos nuevos pacientes en el hilo y los conocerás si no estás demasiado cansada para publicar. María y adagio estarán encantadas de ver tu post.
Enviándote amor y mis mejores deseos.
Sylvia xxxx
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Hello, Sylvia,
I have read about the side effects of Zometa but I also read about the side effects of chemo- and radiotherapy, both of which scared the sh*t out of me, but did not materialise. Same with the Filgrastim, which has a list of possible side effects as long as your arm. If I do have problems with the first infusion, then I shall have to reconsider about having any more. I'm going to ask the chemo nurse on Friday whether this is prescribed for all breast cancer patients now, or only us TNs.
My experience of nine months treatment is that the clinical staff are almost all brilliant, be they surgeons, doctors, nurses, radiographers or technicians. The big problem, to my mind, lies with the admin, which varies between poor and dreadful and really lets the clinical staff down.
Susie x
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Hello Susie,
Thank you for your post. I do understand about all the side effects that are listed, but may never materialise. I had no immediate side effects during my treatment, but some time after I had finished it all I had peripheral neuropathy in the feet, and which I still have. My oncologist told me it was caused by the taxane drug I had. I did have a little bit of lymphoedema after the treatment, but it did not bother me much, seemed to go away, but came back last year after all those years. I can cope with it.
It would be very useful to know whether the Zometa is now prescribed for all breast cancer patients or just those with TN receptors.
I was interested in what you had to say about your experience with staff over your nine months of treatment. I felt the same about all the front line staff with whom I dealt and thought that the female team I had, oncologist, breast cancer surgeon and breast cancer care nurse, were completely dedicated. It is a pity that from your experience it is the administrators that let the clinical staff down.
Thinking of you.
Love.
Sylvia xxxx
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Dear all,
Susie: congratulations on finishing the main part of your treatment. It is great that you were able to live a normal-ish life through it. I so agree with you about all the medical staff being brilliant, but the system being terrible. After using all one's energy to battle away with the system, it is such a relief to then be treated by efficient, compassionate people.
Gill: wow, you've had quite a few struggles since the appointment with Mr Harries re: getting your local hospital to focus - and then a horrible experience straight after starting chemo. It is slightly reminiscent of the first few months after my mum was diagnosed. Well done on battling away and being really assertive when you had to be. It is sadly crucial to be so these days. I do hope that your journey through chemo is less stressful from now on.
Sylvia: thank you for thinking of us and wondering how we were getting on.
The answer is that my mum had such an awful time in the first two cycles of chemo that her oncologist gave her first two then two more weeks to "recover" before having The Conversation about starting on taxotere (pacliotaxel).
She has been gradually coming up since then, and now is back to about 80-90% of what she was before, but of course now taking blood thinners and beta blockers for the chemo-induced atrial fibrillation.
The whole business with the heart is still the thing that has scared her and me the most. Generally,the doctors haven't seemed too worried about it, as it's apparently a pretty common problem in the over-70s (even if not usually induced by chemo) . But it has changed her perception of herself: she previously took no medication and is now dependent on it (That said, her GP did say that they might try to take her off the meds in about 6 months' or so and see how her heart rate is doing- she is now even more scared about trying this).
We are also-naturally- feeling disappointed that she wasn't able to get though all 4 cycles of AC. It was, however, a no-brainer considering how "eventful" her time on that chemo was.
The new saga we are now encountering is that we have been told we have to pay for the taxane part of the therapy!! This is nothing to do with its efficacy - it is certainly an effective drug, and clearly everyone on this board has had it as standard- but everything to do with the chemo rationing that is having to be meted out in the Oxford health trust. Clearly the Oxford trust is under huge pressure - maybe there are a crazy number of breast cancer cases in Oxfordshire, maybe it is to do with nursing shortages (which I know are a huge problem here) but all we know is that if my mother "wants" taxane now, she will have to pay for it. In 6 months' time, however,patients will be able to have it on the NHS again. So pay for it we will!
Of course, the last thing my mother wants is to put anything else in her body, but her oncologist has said she thinks it would be best to give pacliotaxel a "try" - and my mum knows, rationally, that it would. We of course feel very nervous following the AC experience, but do understand that no two chemo experiences are the same. The oncologist also said they will proceed very cautiously and my mother should be prepared not to go through all 12 cycles; they may well stop her after 6.
So, after a month's break, we're getting ready to ride the chemo rollercoaster again..I'll let you know when we actually have a date.
Good luck to Gill with treatment, and- to everyone else- I hope you can get on with "getting on".
Oh, Mary, congratulations on reaching your 5 year mark - a fantastic milestone!
Flora x
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Hi Flora,
Thanks for the update. As to your mum having to pay for taxane, all I can say is 'What in the name of bloody hell ....?'
Susie
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Hi Flora,
I really don't know what to say about your being forced to pay for Taxane. After my battle for treatment, I have very little faith left in the system. As Sylvia and Susie have said, the kindness of the Oncology staff knows no bounds and they will be horrified that vulnerable cancer patients must fund their own treatment or just give in. What about patients who simply don't have the means to pay? Now isn't the time to go into battle - just when you and your mum need to focus on getting through the treatment. However, I believe there is a process whereby patients needing NHS treatment, but who are wrongly forced to pay, can appeal for a refund. I'm so angry on your behalf.
I do hope your mum copes with Taxane and has few side effects. I guess that regaining confidence in her ability to be healthy again will take time. Your mum (and yourself) have had such a difficult journey.
By the way, I never stop being grateful that you led me to consult Dr. Harries. Just shows what an important source of information this thread is.
Please give my best wishes to your mother.
Gill X
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Hello Flora,
I have just read your post and I can hardly believe what I have read. I was so sorry to read that your mum has been having such an awful time. If I am reading what you say correctly, your mum had two infusions of AC (doxorubicin and cyclophosphomide) and was so unwell that she needed to have four weeks to recover. I cannot believe that, after that, the oncologist starts talking to you about your mum having a taxane. It makes me wonder just how far patients can be pushed when they are obviously not dealing with these toxic drugs. By the way, there are two taxane drugs, one is docetaxel (brand name Taxotere) and paclitaxel (brand name Taxol). Which one is being proposed? If that were me I would certainly not be taking any more chemotherapy drugs.
I cannot begin to imagine how your mum must be feeling. For someone like your mum, who was in good health before all this, this must be truly awful. She now has heart problems, atrial fibrillation, induced solely by chemotherapy and probably from the doxorubicin (brand name Adriamycin), which is known to cause heart problems. How horrible for her to be on awful drugs such as blood thinners and beta blockers with their nasty side effects.
I think it is somewhat blasé that the doctors are not worried about it because they say it is a common problem in the over seventies. That is such ageism bias.
I can understand how this heart problem and being on these drugs, has changed your mum's perception of herself. I am 76 and I take no medication at all and have vowed never to take any. I do hope your mum will be able to get off those heart medications.
I do wonder what would have happened had your mum been allowed to continue with the AC and gone through four cycles. I do remember a consultant saying, when I was going through my chemotherapy, that they did have fatalities with chemotherapy.
In your mum's situation I would have to have a good think about more chemotherapy. The taxane drugs are very toxic and they can cause peripheral neuropathy in the feet and hands and they can cause lymphoedema.
I think they are hard on the heart as well.
In the recent book, 2018, that I have been reading, the Complete Guide to Breast Cancer – How to feel empowered and take control, by Professor Trisha Greenhalgh and Dr Liz O'Riordan – expert doctors and breast cancer survivors, in chapter 10, Chemotherapy, it says the following: "Is Chemotherapy Worth the Risk?"
"If you have primary breast cancer, surgery gives you the greatest chance of a cure. Chemotherapy is used to reduce the risk of a recurrence. Before recommending chemotherapy, your oncologist will also consider your general health and lifestyle. Chemotherapy can be gruelling even for the youngest, fittest patients. It is offered to older patients but your doctor needs to make sure that you are fit enough to cope with it and that the benefits outweigh the risks."
Flora, you need to get a detailed list of the possible side effects of taxane treatment. I had docetaxel (brand name Taxotere) and my oncologist said whe was giving me that because it was less harmful on the heart than paclitaxel (brand name Taxol). I do wonder whether there really is any difference.
I cannot believe that you have been told that you have to pay for the taxane part of the chemotherapy. Where on earth has that come from? This is the NHS and these drugs should be free at the point of treatment. I would take this matter up because it does not sound right. Breast cancer treatment is free on the NHS and these chemotherapy drugs are standard. I have certainly not heard of chemotherapy drugs being rationed out in NHS trusts. I would not accept this. I had taxane drugs back in 2005/6 and they were free then and have been so ever since. Ask yourself how one part of a chemotherapy regimen can be free and the other having to be paid for. The Oxfordshire trust cannot try to balance the books at the expense of cancer patients! Once again, I think ageism is at work here and I absolutely would not accept it. I wonder if your MP knows about this? I would take up with your MP and I would talk to the media. It cannot be right that your mum has to pay if she wants taxane now, but that in six months time it will be free on the NHS again. Have you been told how much it costs? Way back in 2005/6 when I was having my chemotherapy I used to talk to the nurses and I asked them how much my treatment was costing and they told me £22,000.
It will be your mum's decision to make but she needs to think carefully.
Reading all this really makes me wonder what is happening with Ellen and her elderly mother who is 81.
Sending my very best wishes to you and your mum.
Love.
Sylvia xxxx
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Hello Flora,
Do not give in to this paying business.
Back in 2005/6 when I was going through treatment, I remember clearly the fight that was going on by patients who were HER2+ and needed the drug Herceptin. There seemed to be postcode lotteries going on. I remember women taking the NHS to court to get Herceptin and they always won their cases.
We cannot have a dual standard NHS. What do people do if they cannot come up with the money? The Government needs to pour money into the NHS. It has been starved of funds considering the increase in population and the powers that be are intent on privatising it all. This government is intent on balancing the books on the backs of the poor and the sick, but they waste money on war and arms. I am so angry this evening!!!
Please keep in close touch.
Love.
Sylvia xxxx
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Hello Sylvia,
Flora's mother and I have been just two of an increasing number of victims caught up in a cruel Governmental decision to force Hospitals to balance the books - whatever the cost to patients. Both Oxford and the Norfolk and Norwich University Hospital have been placed under severe financial constraints and are being deliberately starved of further funding due to their (entirely necessary) overspend on staff, resources, drugs and so on. However, the principle of do no harm, as far as Flora's mum's Oncology Consultant is concerned must still be followed. To refuse to fund the already planned treatment could conceivably result in a great deal of harm and is therefore contrary to GMC's very stringent regulations. I remember much of this from my daughter's medical training. This regulation cannot be sidestepped. However, I do feel for the Oncologist who is caught in the middle.
What Oxford Trust is saying boils down to, those who can pay, get treatment, those who can't, can just go away and suffer the consequences. The NHS and the UK in general has now entered a very dark place.
The most appalling part is that people who have cancer are already vulnerable, in shock and frightened. Not in the best frame of mind to fight their corner perhaps. That I won my battle for treatment had a lot to do with my feeling well following surgery and in a position to fight. I doubt if I'd have the energy to do the same thing again if my treatment were to come to an abrupt end.
Like you, I'm absolutely furious tonight and my heart goes out to Flora, her mother and the many other patients caught up in this unscrupulous push to privatise our NHS.
Love,
Gill X
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I've been nursing a cold all week. I rang the Head Chemo Nurse this morning and, as anticipated, she told me to postpone Zometa for a week, so I'm going next Friday.
I'm seriously shocked by cancer treatment being rationed in Oxfordshire and Norfolk. I think I would contact my MP, and maybe the local media.
Susie
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Hello Sylvia,
Just realised thet I hadn't answered your question regarding my taking Zometa. I will begin my six monthly infusions as soon as I've completed my six rounds of FEC T. I've looked up the side effects and will probably go ahead and hope for the best. The Oncologist at Guy's has told me that in my case it will help my chemotherapy to be more effective and the bone strengthening aspect is just a bonus.
With metaplastic cancer, even a small increase in the ability of chemotherapy to kill off any rogue cells has to be grasped with both hands.Of course, FEC T may not work at all on me and there's no way to measure this. Chemotherapy isn't tried before surgery as the response is poor and the cancer may actually grow. I'm not going for radiotherapy as this has poor results too and I do feel that following mastectomy there would be little point in whole breast radiation as metaplastic cancer travels via the boodstream. Clear lymph nodes are good, but no real indicator of spread. I just have to stay positive and get on with it.
I do believe that like the more common triple negatives, once we achieve five NED years, this cancer very rarely recurs. Having looked through the many other types of breast cancer on this site and the rates of recurrence many years later, despite targeted therapy, I'm actually beginning to feel much better disposed towards TN and metaplastic - and I didn't think I'd be saying that two months ago!
Love,
Gill X
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