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rosebud50
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08-01-2013
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21-09-2013
04:36
Hi Was just reading about percentages and 4/8,8/8. From what i understand they are different. I was tested for whether the tumour was hormone receptor. I was given 8/8. I understand this figure to be how strongly the tumour tested for response to these hormones. The doctor takes this number, patient age, history, and other things. This goes into a calculator which pops out a percentage. This was explained to me as: line up 100 women like me and X number will need the treatment. The doctors do not know which of the 100 women will be in the group of X , so we all get given it. In my case for chemo, 2 to 3 % was given. I accepted it, to make sure i did everything for it not to come back. I do not know the tamoxifen benefit percentage, except it is significant for me. I got the impression 30% was mentioned, but may be wrong. Tamoxifen was a real break through treatment in preventing BC coming back. In all our choices, this should be part of the considerations and should not be overlooked as we try and cope with the side effects.
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04-09-2013
05:47
http://www.bbc.co.uk/news/health-23959070 Hi I have just read yet another article on women giving up on Tamoxifen due to its side effects. The research calls for supporting women better to stay on it. ( This has also been discussed in the last year on Women's hour...) What support have other women (and men) been given to stay on it? So far I have had 2 GPs say that it is very benign drug and does not cause most patients any problems. I was in tears, exhausted and not coping with menopause symptoms caused by tamoxifen. I do not get to see an Oncologist again as I am a low risk patient. There has been vague talk that there is significant benefit of me taking Tamoxifen but nothing specific. If I gave up Tamoxifen tomorrow, noone would notice or try to encourage me to continue. What would I like to see?: 1) GP prescribing should have computers that highlight when repeat prescriptions are not activated 2) Better GP awarenes and communication with patients on why they should be taking it, the possible side effects and how to cope, the possible problems if stopping it. What do others experience?
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07-06-2013
04:58
Dear All,
I have been a bit quiet recently, but last posted when knocked over by fatigue. It has been good to read everyones stories especially news of holidays 🙂
I am still going through firsts - first time to comb hair, first hair cut, first swim .......
The fatigue is easing and thank you for encouragement. I am now back to working 7 hours per day and just 1 hour of sick pay. Not far to being full time, although the thought of less sleep does not appeal. It really is a roller coaster ride of ups and downs.
Wishing everyone a sunny happy weekend 🙂
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21-05-2013
07:51
Dear all,
yes it does get better!
I worked through chemo and dropped hours at the end. On tamoxifen, started upping hours and the had major relapse. Tears, tiredness, could not think straight, could not cope. i had nearly two weeks off. i reduced hours even more. I am just beginning to feel more energy and think that it will just take time. Talked to helpline nurse, who said we all go back too quickly. Pace myself, do not cook dinner if too much..... I expect I will need more time off, even if I have to use holiday on the odd day.
I do find it hard not to be full of energy, but I am still coming to terms with everything. I am getting used to a new normal.
holiday coming up, plan to get plenty of rest. Wishing everyone well.
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15-05-2013
05:50
Dear All
Nice to hear good stories and talk of holidays.
I am still struggling on the fatigue bench. Everyone says how well I look When all I want is to go to sleep. My boss commented in appraisal that mentally I was still recovering. Knocked confidence since had tried hard to make sure work was of a good standard. I can not imagine being full time yet. Any advice appreciated.
fingers crossed for a wonderful sunny summer
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15-05-2013
05:32
Hi
i have sent you a PM about parking.
If anyone else is being treated in cheltenham and want local knowledge of parking, let me know.
a good hospital, great staff, with a maggies nearby.
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04-05-2013
05:34
Hi
Glad to hear everyone is doing well and hope everyone has some sunshine.
I seem to be struggling at the moment. I had a real crash a few weeks back, in tears, exhausted beyond belief, could not think straight. I ended up in bed for 10 days and now take a mild anti depressant to help with hot flushes. I have had to reduce my hours at work and the BCC helpline advised it may be another 3 to 6 months before I am over this. Full time will have to wait a few months. work have been understanding. I am getting frustrated at needing to sleep every afternoon and constantly plan not to over exert. Trouble is I look well with rosie cheeks from chemo.
sorry for the moan. I wish I had been better advised about how long to expect a recovery and taken things more gently.
Dragonbunny , if you really are that tired in the afternoon then you may want to delay full time. Macmillan reckon 6 to 9 months after treatment.
I had better go and find some energy to watch a film tonight else i will be snoring durng the opening title .
wishing everyone a happy weekend.
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26-04-2013
01:44
Hi janemod
I had to go on mild dose of anti depressants with tamoxifen. It worked almost immediately with no other side effects. I am sleeping better and flushes minimal.
There are a few other alternatives, including low dose of a blood pressure medicine.
I went down with fatigue. Felt like i had hit a wall. Am now much better and glad i did not delay getting help.
Like everyone, i would have preferred not to need to take more medicine but I need my life back.
Take care
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14-04-2013
10:36
Thank you to everyone for sharing. I will try and be diplomatic at next meeting.
it is a shame they cannit label my file with a red warning label !
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13-04-2013
10:14
Hi
Looking for advice....
I have just finished treatment following surgery, chemo and am now on Tamoxifen. Whilst a lot of my care has been superb with few delays, there have been areas of problems and I really would like to be able to discuss them with someone. I feel my voice is not being heard.
A lot of my treatment happened in August so I ended up seeing all sorts of different BCN, with no consistency and things forgotten.
After SNB, they had to apologise that they had only just re-evaluated my scan and I would have to have a MX. I was given the choice of whether to continue chemo first then surgery or vice versa.
Saw oncologist who seemed unaware of my choice and launched into 20 mins of why that choice was bad. When got word in edge ways to say that surgery was not possible then, she had to back track but damage was done.
Switched to surgery first but PS not available so used another surgeon for simple MX and asked for delayed recon. After surgery no call from nurse. When I called to have dressing changed was told hospital information wrong and they did not do it, go to GP. GP nurse surprised and said that BCN centre usually sees patients. Was not even asked how I was. At follow up appointment, no mention of prostethis and had to ask. No mention of follow up appointments. In fact they seemed more concerned to get rid of me.
I have managed to get through chemo and see oncologist for follow up. She started talking about a pink form. I look blank and comment that I wanted to ask her about follow up scans. Turns out I should have had this information before.
BCN nurse decides to give me an appointment with PS and books me in with someone I have never seen and not the surgeon I have been under. Ring up and she is on holiday ( She probably needs it with me as a patient.) Appointments secretary swtiches me to correct PS.
To top it all, my GP prescribes tamoxifen and tells me I have to "get on with it" when I worry about hot flushes. Get to a crisis point with fatigue and cannot cope. Talk to another GP who says the sleeping tablets I am on will cause hot flushes, prescribes different. Tells me to get a herbal remedy that is fine to use. ( Oncologist has said not to use herbal remedies). Go to buy it and check with pharmacist. The packets says not to be used by people with my diagnosis!!!!!!!!
Not to mention, two appointment letters going missing in the post and one arriving at 12:00 for a 13:30 appointment. I only attended because I kept ringing to find out when they were.
Apologies for the long post. I now feel that I want to express my concern and anxiety.
+ What else has been missed? I am not trained in breast care so do not necessarily know what to ask. I keep having to think back over every appointment and remember tiny snippets of information that have not been followed up.
+ When my BCN is away, could her colleagues please fill in fully for her. Do they not have check lists for each appointment?
+ Better information for coping with the side effects of Tamoxifen. ( We do not have to cope there is medication.) The BCC helpline nurse was very good and the only person to spend time talking through the issues I am facing.
As a patient, how can I get my voice across without offending the people I need to treat me?
I feel I have a stake in my treatment and also a stake in the NHS as a tax payer. A business would be interested in its customer experience and looking to improve and resolve issues. Why not the NHS?
Thank you for reading!!!
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22-03-2013
05:53
Hi
i was borderline and had chemo. Based on my age, I wanted to do everything to ensure it never came back. It was a year of big family events and i did manage to attend most. There will always be future events to catch up.
your oncologist will discuss benefits against long term small side effects. Age, weight, smoking history come into it.
best wishes
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21-03-2013
05:44
Dear All,
First checkup completed and even behaved myself! I still cannot fathom the queueing principle of the NHS. Two patients booked in to the same time, but I arrived first and got seen first. I was still late going in but only by 35 minutes. Left a waiting room full of patients. Just how do they cope? That is the nurses and doctors..... It appears to be my last check up with the oncologist and now have to have a yearly mamogram with surgeon. Apparently the BCN should have told me about this, but did not. Once again cannot fathom out the inefficiencies of this system......
I have had excellent treatment but have had to keep on top of everything.
Daffodils are out. A common cold has left me with a drippy nose. Am desperate for better weather to enjoy going out and getting fit again. I did compare hair styles at lunch and the men all agreed it was very cold without much on top. Someone with solar panels reckons in the last 2 weeks they have made 100KWh of electricity. Where the solar bit came from is a mystery to us all after the last few weeks weather!
I hope everyone is keeping well. Best wishes to those in surgery, chemo or rads.
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20-03-2013
08:08
Dear All,
Thank you for advice on checkups. Have just written list of questions and charged the kindle ready for my appointment with the waiting room. Have promised wonderful OH that I will behave myself. I am ready for first check up. I am not very good at this stuff and am feeling well enough this week to resent sitting still waiting! ( I nearly started a new thread about things to do in a waiting room ..... )
The daffodils are now coming out and looking pretty. Holiday is booked next week and hopefully some reasonable weather to get walking and cross country skiing. Hoping to include an outdoor natural thermal pool to watch stars in the sky.
Best wishes to all having treatment and surgery.
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19-03-2013
09:03
Dear everyone,
thinking of all those doing surgery or rads.
I have my first follow up appointment with oncologist on Thursday. I realise I have no idea why. I will ask about follow up appointments because I have no clue. Have not spoken to BCN since September. Apart from a good moan about SE and being told to get on with it, is there anything I should be asking or checking?
( apologies for basic question, my boss seemed concerned about the appointment. my boss has longer experience of this than me.)
best wishes to everyone
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17-03-2013
01:08
Dear BeeB
Can I gently voice a different opinion? Why not work 2days, rest a day and work 2days? Have you tried this? Surely you would not be as tired on day three, so better for work on day four and five? ( or so argument goes )
I can appreciate that you want to get your life back and loosing money is not good. however, employers struggle to balance requests for everyone to have three day jolly weekends leaving full timers tired and over worked never getting a Friday.
in putting your case, maybe you can ask why they think a random day will help? Or is a Wednesday for a reason, as suggested above? Why do they not want you to have a Friday? By getting a dialogue going, can there be room for negotiation and flexibility on both parts?
I was advised about going part time to make sure someone took over your work. If not you end up doing full time in part time.
I would like to think all employers would be open to dialogue and reasoned explanations but know this Is hard to find.
good luck with your review and i hope you achieve a good balance.
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16-03-2013
08:52
Hi
Post treatment can deinitely be hard as all the issues buried come to th surface. i am definitely less fit now, more tired and worried than during treatment. I keep thinking that the sunshine of summer will solve all problems.
I can recommend Jhn Lewis for a new outfit for a wedding. Book a personal shopper for free who will get a range of outfits, specify your price range, and you will look slimmer. Just a warning, I had a family do and was told by elderly aunt the state of all womens cleavage! ( one false, one recon .....) way too much information 😉
Gentle hugs, we are still on this roller coaster.
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16-03-2013
06:04
Oh, just remebered for surgery an argos V pillow works well to help sleeping.
Found comic relief hair shaving too close to reality to enjoy. 😞
take care everyone.
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16-03-2013
05:37
Hi
i hope everyone is warm and dry. Wet here with no daffodils, which is a big local hit.
I did not buy any different clothes after surgery And wore ordinary clothes. Front opening shirts and bra speeds up doctor appointments. I found that elbows in is important. Stand on tiptoe to reach. To get on a jumper, up onto Bad arm and over head. Bend bad arm at elbow and put in good arm. Use good arm to straighten out. take off in reverse. Make sure you sit down! It really is interesting how much I could do with one arm, apart from the times I needed more TLC. I was home in a day and could look after myself during the day including shallow baths with care. I could not cook for fear of not lifting hot pans with One hand.
1 to 2 weeks lifting no more than one mug of water in kettle with bad side, use good side. Movement was arm outstretched to in front shoulder height. Side movement, bend at elbow and touch stomach, move two inches out. no hands on hips! Weeks 3to 4 get better and more movement.
wishing all having treatment well and speedy recovery.
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14-03-2013
11:11
Dear All,
It feels a very long cold winter. Off work again with a stinky cold and very drippy. Feel like a real wimp but really cannot go to work if I am so tired and ill. Returning to normal life and germs is certainly a shock, apologies to those with children who have had to cope all the way through 🙂
I have finally bought my Eurotunnel insurance. They seem to be really cheap and cover everything including hot air ballooning. I asked about regular checkups counting as hospital appointments and was told "fitness to travel by doctor" is all that is required. Seems to good to be true and have yet to find anyone who has claimed.
I continue to find acupuncture working for me and I am sleeping better. Still occasionally need a mild sedative. Does anyone get through this without eventually having to use sleeping pills of some kind for a short while?
Sending best wishes to all in treatment - chemo, rads or surgery. We will soon be on a ".. moving on" thread.
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