Breast Cancer Now Forum

I think I asked this on another thread - it's quite confusing having multiple threads with the same title. However like others have said I am concerned about the effects of extra radiation (no matter how small - it is still more radiation that we don't need on top of everything else we have had). I would like to know if anyone has the right or the option to ask for an alternative. Googling (always dangerous I know!) has brought up some stories of people not being allowed to fly when they have said they don't want to be scanned. BCC do you know the answer to this? ... View more

I've just bumped a recent thread called cold cap is it worth the pain. Hope it is helpful Fortunate and anyone else reading xx ... View more

Bumping (again) for new members. BCC, any chance of getting a sticky as "has anyone tried the cold cap?" gets asked over and over again and I don't think the search function is that brilliant. Good luck to anyone starting out xxx ... View more

I went back to work in May after being off for a year. When I went back they told me I was entitled to all the annual leave I didn't take last year (I still had loads left when I went off sick), plus my full year's entitlement this year. So they basically sent me back home to use up my annual leave - it was that or pay me for it. Either way you shouldn't lose out because of being off sick, and I believe some people have taken their employers to court over this and been successful. See what your HR dept say but it is definitely worth looking into if they try to fob you off. Good luck! xxx ... View more

Bump! ... View more

Hi Justine I used the cold cap and it was very successful. I lost quite a bit just before my second EC and thought "uh-oh, here it goes" however it did not continue like that. My hair did thin but it was not noticable to others, I just wore wide hairbands most of the time to cover my parting and hats when I couldn't be bothered fiddling. Because I had plenty of hair round the sides it looked quite normal as long as my parting was covered. I would persevere with the cold cap if you don't find it too bad (I thought it was okay but I know others have found it unbearable). Even if you lose a bit more I still think it helps to have a bit of hair poking out from under scarves etc. My hair is growing back now and it is exactly the same as before. I have heard people say theirs grew back a different colour or texture but mine is no different and is now blending in nicely with the existing hair. You would honestly never tell to look at me that I had chemo - and that's the way I like it!!! There are lots of threads about the cold cap, I will bump one I was chatting on recently. Best wishes to you and hope all goes well. ... View more

I must confess I used to think tamoxifen was a bit of an afterthought, I have had chemo, surgery, rads and herceptin and am now on tamox; if I had to rank them (in terms of effectiveness, necessity of having it etc) I probably would have put tamox last. I think because it is just a little pill it seems so minor compared to other more invasive treatments! However last time I saw the onc he said something I thought was fascinating. That if he could only give me one treatment it would be tamox; over and above chemo. I always thought chemo was the biggie, but he said the tamox actually gives you more protection. And I agree it is very good to think its protection can even last beyond five years. It is horrendous to get BC in the first place and of course I wish none of us had to go through this. but in some respects I do feel lucky that there are so many good treatments available for BC - I feel desperately sorry for those with rarer cancers and other illneses for which there are not as many treatments. ... View more

I have just watched this on iplayer. I agree with others, it was great to hear about the research that is being done, and the doctor saying in his lifetime he predicts BC will stop being a killer. However I was upset to hear what a huge problem it is getting samples to test, and how this is basically the biggest hold-up for research. I was never asked if any of my tissue could be used for research. I would gladly have said yes, how wonderful to think I could help in some way. Instead presumably it went in the medical waste bin. It made me quite angry - I am a big recycler and hate waste of any kind!! I cannot believe that while researchers are desperate for tissue samples that could potentially help to find a cure are presumably just being chucked away. ... View more

Hi Erin, I just wanted to wish you and Jo all the best. People can often forget how hard this can be on partners, they are expected to be strong and supportive, whilst they are dealing with their own sadness and fear at what is happening to their loved one. So make sure you take some time for yourself, and as others have said it is useful to have some support that is just for you. It is not being selfish, think of it as by taking care of yourself you will be stronger and better able to support your wife. Very best wishes to you both. And I too would love to see a picture of the puppy! xx ... View more

Congratulations Andie! What a lovely post. Have a fantastic afternoon and enjoy some yummy cream cakes! xx ... View more

I just got insurance for a week in Spain with Insure Pink for myself (I have recently finished herceptin and am now just on tamoxifen) and my husband for £35. This includes BC cover and no additional excess will have to be paid if I do have to claim for anything BC related. I got a quote on line and then phoned to clarify a couple of things and make the purchase. It was good as then they already had all my details and I didn't have to rehash everything on the phone. The lady I spoke to was very pleasant and helpful. Sorry to hear some people have had poor experiences with them. I don't know if I might have got cheaper elsewhere but to be honest I thought £35 was cheap enough and worth not having the hassle of phoning round for a load of quotes. I can relax now it's done! I know it's pathetic but "grown up" stuff like insurance really scares me - sad I know! Hope everyone is feeling well and looking forward to their hols xxx ... View more

SGL, good wishes to your husband and his colleagues, and of course to you and other families of those who put themselves in danger to protect the rest of us. It's so awful what is happening. ... View more

Sorry, not going to stop! ChoccieMuffin you always take the time and trouble to respond kindly and thoughtfully to people's posts and I'm sure everyone would agree you are a hugely valued member of this community. So have another hug and like it!!!!!! Sorry to hear you are/were having a wobbly moment - you are so right it happens to us all, and we are all here for each other when it does. Hope you feel better. Much love xxxxxx ... View more

Oh Jen how awful for you. Obviously I am not a professional but it sounds to me like what you experienced was a panic attack. Have you seen a counsellor at all, or could you? I am (through the cancer care centre at my hospital) and whilst she is not a miracle worker I have found it helpful to talk things through with her. I don't think there is anything wrong with sticking in your comfort zone for the time being - don't feel you have to push yourself to do things that make you anxious. I have said no to occasions that would have involved meeting new people as I just didn't feel up to it, instead I have stuck with my family and close friends that I feel at ease with. Another thing my counsellor has helped with is giving me "permission" to say no to things. I always worry I would offend people, however I am learning to put myself first and not do something if I don't feel up to it. As for worrying about people asking about your holiday, you don't have to tell them the truth if you don't feel like it! You could just say "It was lovely, thanks" and then quickly change the subject or ask them something like "have YOU got any hols planned" or say something like "but hey ho, here we are back at work again!" to discourage going into any further detail. I have tried this technique in a number of ways and it does work very well. I am sure the helpline would be able to advise you too. I'm sorry you are going through this. Very best wishes to you xxx ... View more

I have finished chemo now but definitely had the strange smell thing. As soon as I got back from the hospital I had to get out of the clothes I had on and get them in the wash, everything even my bra! And I would practically run to the shower and have the longest shower ever, I felt like I could smell the chemo on my skin! I also drove my husband mad complaining about strange smells in the house, but he couldn't smell anything. So you are definitely not alone! The strangest thing was there is a house near me that has the most beautiful garden full of flowers. There was something I could smell there that reminded me of the chemo room and made me feel queasy. And that was not just me, I said it to my husband once when we were passing and he agreed. As an experiment I might walk past and see if I can still smell it! Very best wishes to those still going through this, it DOES end! I remember thinking I could never beleive I would ever feel normal again, but I am getting there xxxx ... View more

I'm not too bothered about people seeing me, after the amount of doctors, nurses, med students, ODPs, rads techies etc I feel like half the world has seen my boobs anyway lol! However I am very concerned about the radiation issue scottdolly mentions. I have just googled a few news reports from earlier in the year which claim the dose of radiation is incredibly tiny and much less than you receive from natural background radiation. http://www.bbc.co.uk/news/health-13990434 But is is STILL an extra dose of radiation, even if it is only small. I don't suppose they have been round long enough for people to study the difference in the effects they may have on people who have already had lots of medical scans, versus those who haven't? Does anyone have the right or option to ask for an alternative? I would be perfectly happy to be searched (obviously providing it is done respectfully and preferably by a woman) rather than receiving radiation. ... View more

This is going to sound really miserable but I hated having herceptin at home! I actually quite like the hustle and bustle of the hospital, with people are popping in and out, chatting to the nurses (who I have build a bit of a relationship with) and other patients if you feel like it. Or if you don't feel like it, just people watching or sitting quietly with a magazine. I felt horribly self-conscious having someone come into my home, I felt like I had to tidy up, I'm sure they wouldn't care but I would have been embarrassed if my house was a state. Also, at times it was excruciating having to make small talk for an hour and a half with a total stranger (I had a different nurse every single time) when it's just you and the nurse sat there. That is just me though, and no offense meant to any of the healthcare at home nurses who were all perfectly nice. I just would rather have gone to the hospital. I am lucky that my hospital is an easy 10 min walk from my house so I never had to worry about driving there, parking etc. I am sure it makes a big difference if you do have these things to consider. I just wish I could have been given the choice but I was told it was cheaper to have it at home and therefore I had to. Good luck and sorry if I sound like a moany old cow!! xx ... View more

Mezzomamma, your friend's question "do you feel as well as you look?" is one of the nicest things I have ever heard! What a lovely way to give someone a compliment whilst acknowledging that they may not be feeling great - and giving them an opening to tell you that if they wish to. Like many posters I have felt frustrated when people have told me I look good, feeling like either they are lying to try and make me feel better, or even in some cases as if they are implying "you can't be THAT sick then!" Also I hate it when people ask how you are but you can tell they just want to hear "fine thanks!", and they get that glazed look in their eyes if you start to tell them how you really are, because they don't actually want to hear it. (yes, manager, I am talking about you..!!) ... View more

Congratulations Dawn, what a wonderful post. Very best wishes to you for the next 21 years xxxx ... View more