Breast Cancer Now Forum

Hi ladies, sorry I haven't really been on here since I started the thread which isn't good. Life is a bit hectic here as my huse is going n the market soon and I've been trying to get all the things that haven't been working properly sorted out. Snoogle, I do hope that the rash has improved and that things went well with your oncologist. Linda, you're right, I didn't have rads so know nothing about them. I was heading that way until they didn't get clear margins at the first WLE so plans were changed. I have now finished treatment as being triple negative there is no medication I can take. I may need more ops though...we'll see. I'm doing okay now almost 5 months after the last chemo though energy levels aren't yet what they were...do they ever come back? Leave on Monday for my first break away since dx last April so really looking forward to getting away from it all with only two of my 3 children but the other one will return from gap year working in Canada 2 days after we get back...can't wait to see her as she's been away since just after I finished chemo...I have a little bit of hair now...not much! I may not get back on here before I leave as I still have loads to organise but nice to speak to you all. Lee x ... View more

Hi all, thank you bluebell for raising this issue and to Dawn for giving the website details...I found the suggestions very helpful. I have 3 friends who are dealing with terminal diagnoses. I myself was dx last April and after 3 ops and 4EC/4Taxol chemo which finished in November I am progressing well. I am a very positive person and play the cards I've been dealt so very happy to talk to anyone in a very straightforward manner about my situation...heck, I might be run over by a bus tomrrow! I found it very interesting to hear the comments on the website of someone who thinks like me. I just wonder about those who don't deal with reality in quite such a straightforward manner...I'm actually relating this to an aged (90) mother who isn't dealing well with the end of her life even though it's inevitable! That is a completely different issue I know but is the only link I have to the alternative attitude. I do, however, think that the same priciples apply which is basically to take your lead from the individual...try to give them what they need, I suppose. Very difficult I agree but as long as we are there and sensitive to their needs I think we're doing all we can for our loved ones. wishing you all strength Lee x ... View more

Weight bearing exercise is considered to promote white blood cell production, though it hasn't been proven. A good walk, if you have the energy,is a good way of achieving this. Keeps the dog (or somebody's dog) fit too! Lee x ... View more

Just bumping this up laraine as I think you have a valid point. Any lumps should be investigated! When will these doctors realise this! "painfull" means different things to many people. There is a huge variation in people's pain perception. The lump is the defining factor and anyone who detects one should push to have it investigated...can be difficult, I know, if up against a strong medical voice...just have the coursge of your convictions1 lee x ... View more

Hi adq, I do feel for you as I think I know what you're going through. I am now on the other side, finished chemo in November and hair is beginning to grow back. However, I completely remember the worry of hair fallout! Let me just reassure you...it's not as bad as you think! I was really worried abot the hair loss and, like you, it started to come out as I combed my hair...I never had what I think must be a distressing experience, of waking up in the morning with my hair on the pillow. There came a point where, when blow drying my hair, it came away in my hand! Shocking...but I decided that was the time to do something before it came away on the pillow...I suppose it was important to me that I had control...we're all different. I decided to remove my hair that night and I was really worried about how I would react to seeing myself without hair. But it actually wasn't that bad! I was quite surprised. For a start you're already a bit used to seeing yourself with a towel around your head when you've washed your hair...I felt that the view of myself in the mirror after that wasn't that different. I couldn't find my son's hair shaver when I wanted to remove my hair (which wasn't that long to start with...may make a difference)so I used scissors to chop at my hair and wasn't shocked at all at the result...quite reassuring! It would have been good to have had hair shears available to do the rest...all I had were dog shears and I didn't think I should use them! I actually used a bikini hair remover ...twice! Not to be recommended as it made me a little sore but not that bad...it's possible I even used it 3 times. Eventually the next day I used a razor. But the lesson for me was that it's never as bad as you expect. I thought it would be the worst part of it all and I'd gone through a mastectomy and recon, but it wasn't anywhere, at all, nearly as bad as I thought. Just take heart, it is all temporary. I did have my wig already in place (that's it in the photo..I had another but this was my favourite) to me it always looked like a wig but I have bumped into people when I was wearing it who hadn't heard about my cancer and were so enthusiastic about my new hairstyle (maybe just shows taht my usual hair wan't up to much!)! If you're worried about the reaction of others my experience tells me that actually, people don't really look at you that closely. I don't know where you live but I can recommend Trendco as a wig service. Their main office is in Hove, Sussex but they have a great shop in Church Street, South Kensington (?) a great selection and good advice. I would recommend that you go and try different styles...it's not really possible to know what suits without trying, I can assure you! If you can go before your hair disappears all the better but not the end of the world. I wish you the best of luck...it seems daunting but once anything is faced I have found that it was never as bad as the expectation. Hope it's the same for you. Wishing you all the very best. Lee x ... View more

Hi Lulu, long time no speak! So sorry to hear your news. I completely understand what must be your devastation at the news and your reluctance to start a baby with your partner. I know that you, like me, are realistic and you, at least, are very knowledgeable about the progress that is being made in the research of this horrible disease. I commend you for thinking about the legacy you would be leaving a future baby...but research is really moving on and even for your girls (not dissimilar in age to mine if I recall) my friends who work in oncology are quite dismissive of their risk as they are so certain of an optimistic future for them so even more so for newer siblings! Obviously you have lots to consider about your own well being before you think of using that experienced body to create another! But don't dismiss the opportunity immediately because of the genetic testing. You have such a lot to offer a baby it would be such a waste to miss the opportunity. Sorry, I'm beginning to sound a bit odd to myself! I hope you know where I'm coming from. Look after yourself first. Lots of love Lee x ... View more

Hi Lily, you are clearly feeling very low and in need of lots of support, emotional as well as practical. I'm sending you a big hug and wish I could do more. Rock bottom is a desperate place to be and saying that the only way is up sounds terribly trite but it is true. You really need the time to recover and I hope that your husband can take over the childcare and household duties this weekend to allow you to rest completely otherwise you'll make yourself ill. You've already had lots of advice as to who to contact for help. I would willingly help of you're in my area, my children are older now. You can always talk to us here. Please take care and look at my name! xx ... View more

Thank you Sam ... View more

Thanks Debs and Laura, perhaps I am expecting too much. I suppose it's because I've managed so well on the chemo until the last 4 weeks or so.....I've been decorating and all sorts of things....but definitely not now. I think postponing the op until the New Year has got to be the way to go and I'll definitely speak to my surgeon tomorrow. The reassurance is much appreciated. L x ... View more

Hi all, this thread has been so reassuring as I thought it was just my hair coming in grey/white. I'm delighted to learn that this may not be permanent. Thanks. L x ... View more

Hi, yes I also used manuka honey. Forgot to say that. Lots of good reports about it. Careful not to dissovle it in hot water as this can destroy lots of the beneficial elements of it, but it's delicious on oat cakes and in lots of other ways. I was sent an email recently extolling the virtues of honey with cinammon....haven't tried it but can't do any harm. L x ... View more

Hi Dena, I just finished chemo 12 days ago, 3 EC and 4 Taxol. The taxol I managed to do every 2 weeks without the help of any white blood cell stimulating (GCSF) injection as I had a bad reaction to the one given with first EC and my white blood cell counts were always good except once when I picked up a urinary infection. Whilst little has been proven to promote white blood cell production the following might help and seemed to work for me. PROTEIN eat plenty, whilst not exactly a pure vegetarian I don't really like meat so eggs, cheese, pulses and nuts were my main source. WEIGHT BEARING EXERCISE I tried to keep up with my dog walks, that became more difficult towards the end of chemo as the fatigue set in though. AVOID INFECTION seems obvious but, particularly with all the bugs around at this time of year it's worth being vigilant, keeping away from bugs or people with them, keep away from large crowds as this increases the likelihood of you coming into contact with bugs. Wash your hands constantly, I didn't let friends kiss me even when they were well....extreme I know but I desperately wanted to finish the chemo as soon as I could. REST you just have to listen to your body on this one. I hope this helps. Gosh when I re-read it it makes me sound a bit OCD which I'm not at all....just wanted to do what I could to keep those little white cells multiplying. Good luck with it all. L x ... View more

Hi Susan, I guess you've already worked out that you are not alone in your reaction to diagnosis, I still haven't cried. Well, I did once.....to my surgeon too and he isn't noted for his bedside manner but that was due to first chemo effects plus GCSF(?) injection. No doubt you are a bit shocked but maybe, like me, you will face everything with a positive and motivated attitude. My chemo nurse asked if I was perhaps just keeping it all inside but I honestly don't think so, I'm just getting on with dealing with whatever I have to give me the best outcome. I think it helps but tears can be good too so dowhatever gets you through. L x ... View more

Hi I'm sure you're right that we adapt and develop, at least I hope we do as intelligent beings! How unfortunate to get hit by this dreadful disease twice, you sound as if you're more than coping though, and doing well. Certainly some doctors are not recruited for their bedside manner! It really should be a part of their training, then again if sensitivity to the feelings of others isn't in you perhaps it can't be taught. Power and strength to everyone fighting this disease and may everyone you touch treat you with consideration. Lee x ... View more

Thanks for the info Bubs, very interesting to hear the details, I'm sure I will be as happy as you by the end of it all as I have a great surgeon who is able to do his own plastic surgery work....one of the new breed. The fact that you are able and confident to share communal showers is amazing! I'm not aiming that high! Annie well done for making your decision. Good luck with it all. Mounties, it is quite common to have almost stitch like muscle cramping.....I certainly have that. Apparently that's the repositioned back muscle still behaving like one until it learns its new job. Anything more or if you're still worried it's always est to get it checked. Lee x ... View more

Hi Bubs, I am very impressed by the fact that you find your recon outstanding and would love to know a little more as mine isn't there yet but I live in hope! Did your good result come from one op or did you have more? Is the result quite soft and was it always like that (mine's very hard)? How long after the op(s) would you say the result was as good as it is now. Sorry about the interrogation, I am trying to work out what is a realistic expectation from my upcoming adjustment op. Thanks Lee x ... View more

Hi Bahons, I must say that I think your attitude is something to aspire to. To remain so centred and unaffected by the negativity of others is a wonderful attriute, I'm sure you've worked at it and it's to your credit. I try but am nowhere near as successful as you but I know that's the best way to be so being reminded of it by yourself is good for my soul or something.........gives me a kick up the ackside anyway! I need to be reminded of such things....thank you! Lee x p.s. I'm having problems with the letter b on my laptop, trying to correct all the missing ones but forgive me if I miss some.....probaly biscuit crumbs jamming it! ... View more

Hi all, S I am completely with you in what you say, except for the fact that I think I have taken at least a bit of offence at what at least one friend has said (when told I had to have mx and immediate recon her comment was "what extreme lengths to go to to get a new pair of t**ts!") which I found gobsmackingly insensitive on every level but did realise that she was trying to keep things light as I had been. I have put it behind us but I was shocked at her insensitivity which she apologised for. I also look back and realise how little I understood about this disease when others were going through it, though never close frinds or family. Life is definitely a very long road with lots to learn along the way and some people seem to be more intuitive or empathetic than others, that's natural.....good old emotional intelligence I guess. I am lucky not to have experienced anyone crossing the road to escape me, that must be so hurtful. Love to all Lee x ... View more