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Bunty
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01-05-2012
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31-01-2019
02:29
Hi, I had BC 19 years ago, I can’t believe it! But here I am with CLL, that was a shock. I am on W/W my white bloods are stable, they are rising slowly. If your interested, there is a support group called CLLSA and I have been on two conferences. I asked one of the haematologist who was a speaker, I asked him that I had been told that my treatment for BC caused CLL. He absolutely denied it!! He said it’s nothing to do with it. However having two cancers side by side is rather odd.
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08-05-2013
10:13
Hi, just to say my doctor gives me fuciden cream its an antibiotic cream for when I cut, scratch etc my arm hand etc. had lymphodema 12 years now, one word, keep your arm hand or upper body well moisturized. good luck x
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03-03-2013
04:14
sorry Suzy, just saw your post, yes in critical care ward after the op, they gave me a warm huggy cover, it was soooo lovely that I kept asking for it on the ward!! Alas they declined. I was expecting to get an email if someone commented on this thread?
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22-02-2013
01:40
Hello Carolann7,
My name is bunty and just 4 weeks ago I had a DIEP at the Marsden, I have a bad back L5 S1, after the op I was told to walk about, It hurt my back so much but because I have arthitis and a trapped nerve in my spine, my back and leg was uncomfortable. However I was given pain killers that took the edge off it, It was so much better when I got home to my own bed, chair etc.
Its not as bad as they make out because when you suffer from back pain your just used to it! I had a double mx and immediate reconstruction with a DEIP. the only problem I have is that my wounds are dressed daily by the district nurses, cause I got an infection. I am healing nicely and I can sit, walk a bit and judge my own back. Hope this helps you. Bunty x
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02-07-2009
06:19
Hi, I had BC 9 years ago, have just discovered I have BRAC1 alteration in that gene. I am going to have the ovaries removed next week (am v nervous)
My question is has anyone had multiple open surgery and been able to have keyhole for this operation?
I had 2 c-sections and 1 hysterctomy and feel doubtful if the team can do a keyhole method. Appreciate any views you may have.
Best wishes
Bunty
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26-10-2008
06:23
Thanks lainey,
The marsden advised aged 35 years for my daughter, I guess they have to have a cut off point somewhere. I can only hope my brother has screening, he is of a nervous disposition, so I guess she is trying to protect him. My dad I think died of prostate cancer aged 53, but I am not 100% sure, so I have sent off for his death certificate, My hubby might take him out for a curry and have a word. All this treading on bloody egg shells is getting on my nerves. I'm the poor mug who has had the damm cancer, all I'm trying to do is help people........
Bunty x
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26-10-2008
03:27
Thanks for your support.
I made the step and told my daughter I carry the BRAC1 gene, she was surprisingly good about it she kissed me and said thankyou! She says she will welcome the screening that she will be offered- she has to wait 6 months till she stops breastfeeding, something to do with hormones. She has to wait till she is 35 before they screen for ovarian cancer.
My son who is also in his 30's was less than happy about screening for prostate when he is 40. Also to check his "breasts" did not appeal to his manhood too much. However I gave him copies of my letters and I hope he will take it on board, His wife was supportive to me as her mum has also had BC. So I hope she sorts him out, along with the grandchildren.
As to all the cousins, not done that yet, can't quite find the right time but I will. I am scared by their response in case I send them all running frantically to their doctors!
My brother was much more trickier, I haven't actually spoken with him yet, but have spoken to his wife who is like the gate keeper, she says she thinks he does not want to know about it, but she will talk to him about it, She says he will get checked up at his own GP for prostate screening soon. Also she does not want to know about BC and prostate in her family either. She does not want to talk about it socially either with him and me. I offered copies of my letters explaining everything, but she declined. They have kids and also grandchildren.
I said to her what happens when my daughter sees your daughter and maybe mentions the subject, how would you feel about it? She says thats ok.
So there is my dilemma, Do I push it with my brother to know or do I let sleeping dogs lie?
Appreciate your advise or comments
Bunty x
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16-10-2008
11:10
Hi, I have looked back to my original diagnosis, does anyone know what vascular infiltration or invasion means please? I understand what lymph node means.
thanks Bunty
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14-10-2008
12:54
Hello Zennor,
I am of Ashkenazi descent also, BRAC1 gene carrier. I have been recommended for ovarian screening or ovaries removed, I am waiting for my referral. I am not really bothered by this increased risk, as I am told they can remove ovaries by keyhole method, I have a 15% increased risk of ovarian cancer which is still a highish risk. I had invasive ductal BC grade 3 with lymph node involvement eight years ago. Still here................
All the best Bunty x
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12-10-2008
12:01
I had breast cancer 8 years ago, had the full works, the lot. Just recently had a test to see if I am a carrier, and I am BRAC1. Now I have the uneviable task of telling my family the news. I will tell my children and their children the news, my brother, his children their children, and I have a massive family of cousins on both sides, Genetics people are really not sure which side it has come from. I am really worried about doing this, I have mixed feelings about telling people, somehow feel responsible, I know that is daft, I have a letter from the Marsden "to whom it may concern"
Also implicated in this is for some of the men to have PSA done for their Prostate, to see if they too carry the gene.
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11-10-2008
11:44
Hi I have been taken femara for 2 and half years, I have to be on it for 5 years. I have also been on tamoxifen for 5 years. The best time in my opinion is night time before sleeping, along with cod liver oil and glucosomine and gammolenic acid. When I first wake up in the morning, my feet and hands are stiff and I have to walk down the stairs 1 step at a time. Eventually my joints start to work-but they ache for a short while.
The side effects are thinning hair, so much so the texture of my hair has completely changed and gone very curly !! Two operations on my hands for carpal tunnel, high blood pressure and high blood cholestral, apart from that every thing is hunky dory. and of course no sex. dry vagina and all that, now if that has not depressed you enough. One good thing is the hot sweats have calmed down, nowhere near as bad as on Tamoxifen.
Good Luck to all the women who unfortunately have to take this drug
Love Bunty x
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14-08-2007
11:47
Hi
I have been on femara for 18 months, most of the aches have eased up, had both hands operated on for numbness and pins and needles to relieve carpal tunnel. Feet were very bad at first, it felt like I was walking on blocks of wood first thing in the morning. That is gone now, sometimes my hands are stiff 1st thing in the morning but wears off in the day, I do use homeopathic medicine for joint stiffness called "Toxicodendron". It may help, I have the most obvious syptoms as well. if you are interested you can find a topic I started in "living with breast cancer" under 'my life with Femara if you want to read it'.
It wasn't a very happy period of time in my life when I wrote that!
Bunty
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14-08-2007
11:26
I have tried sylk, unfortunately it made me sore (a reaction to it) Anthi is right get your free sample first, as I went ahead and bought 4 bottles of the stuff, so wasted money - suppose I could flog them on Ebay. LOL, I also went on sexy website looking for anything to relieve dryness/soreness one time and bought a bottle of astroglide, same thing made me sore. I gave it to my daughter for her honeymoon.
So I find I drink plenty of water to flush bladder out, and have to use replens every night although it says 3 times a week, I checked with their helpline and my doctor who says its ok to use daily, as the main ingredient is purified water. If you do use this product, I would recommend you use it at night and not as it says on the packet in the morning, cause you will need several changes of knickers.
I can't think of anything else that I have tried for vaginal atrophy.
Good luck, I know how you feel big time
Bunty
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14-08-2007
07:19
Hi all,
The older I get the more bolder I become, and I start demanding things from doctors, I am amazed at myself sometimes! Surprisingly as it may seem, ordinary GPs are not that familiar with breast cancer or many cancers really!! In fact I read an article somewhere that GPs don't get to see that many cases of cancer in a year.
Just because it has become the centre of our lives, it doesn't seem to be the same for the average GP. That most probably explains why he/she is not aware of the side effects of tamoxifen and the available creams etc. I personally have learned a lot from this website and also by asking lots and lots of questions at the hospital.
I don't give a monkies or a toss what they think, its my body and my life and I want to know. If nothing else this disease has made me unafraid of the medical profession.
As once upon a time, they were treated almost god like.
So ask away, they are human like us.
Bunty
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11-08-2007
05:59
Hi Jeanpearl,
Oh how we suffer!! yes I sweated my way through Tamoxifen for 5 years, I know what you mean by a dried up vagina, My cancer was also ER+ and the doctor at the Marsden Hospital suggested I used Vagifem which is a topical low dose oestrogen cream, what heaven and relief it gave me, it was wonderful and gave me an almost normal life.
My sex life was up the swanny though, cause it was sore when we had sex, that might just be me? but at least it helped prevent urinary infections, and I have not had a recurrance (touch wood) yet!!
I stayed on Vagifem and Tamoxifen for 5 years and now I am currently on Femara (an aromatose inhibitor) for 5 years, I was taken off Vagifem because it works differently with Femara and am not allowed to take it now.
So now I use Replens vaginal moisturiser which is available on percription. It is alright to use because it is hormone free. But I much prefer Vagifem.
Don't depair there is help for you
Bunty.
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11-08-2007
01:34
Hi all you smellies out there (no offence) when I was having radiotherapy, I was advised by radiographer to use a product called PIT ROK crystal deodorant.
You just wet the cystal with water and apply to underarms or feet. It contains pure natural mineral salts and it works!! does not clog pores, and is odourless.
You can buy it from health food shops or most probably on-line.
Hope this helps and it lasts forever.
Bunty
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10-08-2007
02:59
Thanks for that Liz,
doh! I should have realised the meaning of AI. A cynical "bc" dictionary sounds good to me, I might just ask if changing the AI would help me, however they were going to discharge me until I mentioned the trial of femara to them, they did their tests and proved I was eligable for it, so I kind of don't want to rock the boat.
Yours feeling humble to the powers that be (oncs)
Bunty
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09-08-2007
11:12
Thanks everyone for your input, and please forgive my lack of knowledge, but what is an AL? please. I am to see the onc. in September and I will discuss things with them then. I am on a trial basis really to achieve the numbers of "survivors" God I hate that term it always reminds me of people drowning at sea. " There were such and such survivors"
Also I found the fact that cholesterol levels may increase, worth me having a blood test I reckon, then I can take statins as well as all the rest of the arsenal of pills Yipee..
By the way Rosamund, I am sorry to hear that you are worried about a dry vagina etc and being newly wed, but I guess I have been drying up for years and so this may not even affect you. I think I was most probably destined to be a nun. Because the best sex I ever had was when I was on HRT, and that only lasted a few years!!
As for what will happen to us when the five years are up, who can tell? maybe we will be cured forever, or maybe another drug will be out by then.
On a lighter note, I feel a bit better to know that I am not alone in all this mess we call "Life"
Bunty
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29-07-2007
05:37
I had bc 7 years ago, 2 operations, radio,chemo, 5 years of tamoxifen, now 18 months of femara. Still have 3 and a half years to go with it. I have endured a LOT in these past 7 years. The more I take this wretched drug the more seems to happen to me? I had terrible joint pains in my feet, which has gone-hurray!! I had pins and needles and numbness in both hands for which I paid £3000 to get them operating on to release the carpal tunnel, otherwise I would still be on the waiting list. I have completely lost all desire for sex even if the most handsome man fell at my feet I would feel nothing, nothing at all. My vagina has all but shrivelled up and disappeared, I use replens on a daily basis otherwise I am so sore from dryness, I am getting bladder infections and am on a low dose antibiotic which gives me thrush so am using thrush cream. I am waiting for the result of an ultrasound on my bladder due to atrophy etc. Also I have cataracts, and of course the good old lymphodema in my hand and arm.
And now I have developed high blood pressure, I rang the oncology dept. and asked if this was related to femara to which he replied "on paper it is". GREAT! now I take 2 tablets to reduce my blood pressure, on top of all the other medicines, my doctor says she does not want me to have a stroke, she says she thinks I am remarkable, when I sit and cry in front of her, she trys to make me feel better, but sometimes what with daily life and all the problems it can be so hard to bother sometimes. I have a husband and 2 grown up children who never ask how I am, They are all wrapped up in their own lives and families. My husband has been ok about things but our lives have changed so much since the day I was told I had had bc. I sometimes wonder what is this all about, as parts of me are slowly eroding away. This must sound terribly depressing to anyone reading it and I am sorry if it has depressed you, that is not my intention, but sometimes I feel a bit overwhelmed with it all. I have had counselling, may need some more to lift my spirits again. Funnily enough my non bc mates haven't got a clue whats its like to be in my postion, and they don't want to know. Funny old life................
Bunty
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12-04-2007
06:45
Replens Good advice to use it at night, otherwise you may feel that you have an incontinence problem! Also it is available on percription I get 4 boxes with 6 applicators in it-lasts around month and a half. I have a pre-payment certificate.
Bunty x
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