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janipi
Member
since
01-05-2012
339
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26-05-2021
08:02
Hello I have just finished Letrozole after 5 years of Tamoxifen and 5 years of Letrozole. I have had lots of pain and dark moments on these drugs. I did find though that after a while I wasn’t noticing the hot flushes as much and managing the pain better. My bone scans showed slight bone thinning so have taken Alendronic acid as well. I only did 5 years of Letrozole but I think as the side effects subsided I worried they weren’t working and my body had got used to them. I have no boob, (not offered recon back then) very little hair (didn’t come back much after chemo) and deep wrinkles. This has aged me. I feel I must be grateful as I’m still here. It is hard to look in a mirror.I have looked at lots of research lately and discovered that a short break is possible and could help it work better. Too late for me now but I think I would have considered this. I can say after just two weeks off it I feel OK and that early morning stiffness has gone. I stuck with it as there was no one to tell you what is the right decision because no one really knows. It was Tamoxifen and all the gynae problems that I struggled with the most. I’m so glad I have finished with it all. Just lots of crossed fingers now. I feel your struggle and hope you find some answers that are right for you. Get a second consultant opinion if you can. Sorry I’m no help. I hope you get the support you need.
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21-08-2016
06:21
ST The camp fire is burning brightly awaiting your return from your hols. I have bottled some choice rude words that you can release whenever you need a good rant. I found BringitOn asleep in the bushes. I woke her up sharpish and washed her off with the hose. She is now fresh as a daisy and ready for action. See you in the JM soon for cocktail night. X
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28-06-2016
02:10
1 Hug
Just thought I would wander in to the woods for a nostalgic walk around. Very quiet and peaceful today. A far cry from some of the raucus behaviour in days gone by after a merry night in the JM. I will remember with fondness all of the Woodies who joined forces to get through terrible times. Raise your glasses to our dear friends who can no longer wander in for a visit. Your humour, laughter and determination will live on in these woods forever. To all Woodland graduates, I salute you! Wishing the best of health to all x
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01-04-2013
11:02
Hi I call in to the site from time to time. I'm now 2 years on to where you are. It's ok to be scared. I thought I was going to die and was planning my funeral. This site really helped me and I linked up with others and we shared our fears. I was grade3 stage 3 and had mx chemo rads and now tamoxifen. It's a huge thing to deal with but keep posting on here and you will find others like you and share experiences. I am out the other side now and although things will never quite be the same I am still me and loving life. Wishing you all the best. x
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20-03-2013
02:48
I can remember the horror of dx day and instead of returning to work as planned I went straight to bed and stayed there. I think there is so much to take in even the strongest of us fall apart for a while. This is when you appreciate the ones you love and let them hold your hand through this bit. Your colleagues and acquaintances won't know what to say to you so don't feel bad about withdrawing yourself away from what you can't cope with. Your boys will get through it in their own way. I know my children were amazing. The important thing is to be honest with them about how you are feeling and stick together as a family unit. I look back now at the horror of it all but I really believe it made my children better human beings. They learned about responsibility and compassion. This is big stuff and you need time. Be kind to yourself. xx
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20-03-2013
02:39
I can remember the horror of dx day and instead of returning to work as planned I went straight to bed and stayed there. I think there is so much to take in even the strongest of us fall apart for a while. This is when you appreciate the ones you love and let them hold your hand through this bit. Your colleagues and acquaintances won't know what to say to you so don't feel bad about withdrawing yourself away from what you can't cope with. Your boys will get through it in their own way. I know my children were amazing. The important thing is to be honest with them about how you are feeling and stick together as a family unit. I look back now at the horror of it all but I really believe it made my children better human beings. They learned about responsibility and compassion. This is big stuff and you need time. Be kind to yourself. xx
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20-03-2013
02:20
Thankyou so much for sharing your" journey. " I read it and it brought back the enormity of what some have been through.I totally agree it is like a slow car crash and now the other side of active treatment, I am still nursing my injuries physically and emotionally. Sharing experiences with others on this site got me through the rough bits and I am so grateful to have this place to turn to if I am having a negative day. I still get them but less often now. It's onwards and upwards for me while I have the chance. Family and friends are more precious. My time is precious. I spend time with the people I love and do the things I want to do. I have never met most of the people on here but I have felt their friendship and support when I needed it. Keep sharing everyone! Love to you all xx
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19-12-2012
10:16
Hang in there Applestreet. I was like this a year ago and the citalopram 10g really helped. It took a few days to settle in. I only wake once or twice a night now and drift back off quite quickly. It's amazing how much better I feel now 🙂 x
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20-10-2012
08:54
Lovely afternoon with Claredroppers. Loving my Happy Bag. I will be getting a supply of them in. www.pixiehappybags.com Great food and people. Good times xx
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19-10-2012
09:05
Sorry to hear Verity C and Moser won't be coming tomorrow:( There are a few speed traps in Oxon Revcat, so I will take it steady. Looking forward to raising a glass (lemonade or similar) to Clare. xx
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14-10-2012
03:43
Hi I am 18 month post chemo and I gave up waiting for my hair to grow back and now have a new wig. I hated wearing a wig through chemo and wore hats/scarves. I waited and waited patiently as everyone said it WILL grow back but it hasn't. I have soft fuzzy hair with male pattern baldness. There was a thread recently about this problem. After a bit of googling I am finding out that TAX chemo could be the culprit and in as many as 5% of cases hairloss is permanent. There has been a study done in France and there is an article on PUBMED but I'm sorry I don't know how to do a link. There is a lady under the name of lazycat on here who is trying weaving as an alternative to a wig. I'm waiting to see how she gets on with it as I might consider giving it a try. I have never been a vain person and didn't mind too much when I lost my hair as I thought it would grow back. I am learning to come to terms with my looks but I will admit it has been very hard for me. I did not use the cold cap and I'm wondering now if that would have made a difference. I always feel so guilty about moaning about it as I know I am so fortunate to be NED and getting on with life. I draw in my eyebrows and use cheap false lashes for going out. Nice not to have to get rid of hair in the unwanted places though. My new wig was cut by a Trevor Sorbie salon who cut wigs for free. It does look really good and not "wiggy" so I am feeling much happier to glance in a mirror now and again. It cost 79 pounds in total which is close to what I used to spend for cut colour and highlights befor BC. Hugs to all fellow baldies xx
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18-09-2012
11:35
Me too!!! A large glass of prosecco as I recall SCACO recommending it. Bottoms up woodies xxx
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16-09-2012
04:32
A bright star shining above the woods. So sad for you family and friends. xxxx
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16-09-2012
03:40
Devastated!! Rest In Peace darling girl. I will always remember our time in the woods and how you made me smile through the worst of tmes xxxx
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14-09-2012
08:39
Good news indeed that SCACO is feeling better. White transit van ready and available for the mission. Just got to dump OH's plumbing tools and find a dustpan and brush. Thanks for updat Alto.
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09-09-2012
06:00
I don't come on to this site so much these days but Clare really touched my heart with her honesty, humour and kindness. sadly I never got to meet her but I would love to join you all and raise a glass to her. Oxford is my patch so easy for me. x
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05-09-2012
02:43
I have met so many fit and healthy women that have been struck down the BC so I find the research and comments in the press puzzling. I I had my children young, (5) breastfed, couldn't afford to drink lol!, Not overweight, homecooked healthy food and homegrown veg and fruit. Plenty of housework too. As Revcat said. I just happen to have breasts and that is the biggest risk factor of all. As for the stress thing, I can time a stressful time at work to the beginning of changes to my body. I was fobbed off by GP and sent home to take evening primrose oil as I was perimenopausal. BC strikes at random though and the only common denominator seems to be breasts!x
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05-09-2012
02:27
Hi Gail. I decided not to use the cold cap as my chemo unit was a long way from home and I didn't fancy spending any more time than was necessary there. I lost my thick mop of hair as I was told I would and was "shiny" bald with not a hair to be seen! I have to be honest and tell you that my hair hasn't grown back how I had hoped. I have male pattern baldness so none on top and sparse at the front. This is 18 months post chemo. My onc is gutted for me and said it is very unusual. I'm left wondering whether I should have used the cold cap. I have come to terms with my hair and have a good wig now. I would say to you if the cold cap is available take the opportunity. I am not vain and told myself that hairloss was going to be fine. And it was... until it didn't grow back. Hairloss was a bigger deal than I thought it would be.x
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