Breast Cancer Now Forum

Good News Morwenna.. yes, Tourettes does seem to fit well with BC. I have found that you do need to become an 'Expert Patient' and that you need to be really on top of things sometimes. I had a home visit from a Nurse when I had a diabolical neck rash and she attempted to examine me without washing her hands, after she had just driven her car and walked in the house! I have been travelling into Central London on the tube for everything (exams, chemo etc.) I was not looking forward to my 4 weeks/5 days a week of rads and I asked my Onc if there was anywhere I could have the Rads and he said "No". Now, I have found another Hospital 10 minutes drive from me, which I could have gone to all along! Suffice to say my Onc works for BUPA and the nearby Hospital is owned by BMI ! Grrrrr..... Rhonda - how are you feeling? You must be going on holiday soon... lucky girl, but you deserve it! Yvonne - I do envy your boating lifestyle, especially in the summer, I like the idea of you 'moving your boat' to access rads... how very civilised!! Is your little dog called "Chico"? I have two Jack Russels, one is called "Chico" and the other "Jimmy" - they are brothers - 3 years old. Even though I have had a huge amount of 'human' support, those little guys have been with me all day and every day, since diagnosis, giving me comfort, love and companionship. I think they will miss me when I go back to work... Have a great day Ladies! Joyce x ... View more

Caroline, how is the Herceptin going? I had my last Tax last Thursday and am in the thick of SE's right now, physically crap, but mentally, I'm good. Morwenna, good luck for today, we are all thinking about you and hope the worst of the flooding is over in your area. Have a good day, all you ladies, we are getting there! Joyce x ... View more

You are right Morwenna - there is alot of stuff written about 'Vaginal dryness' on this site. I've realised that I wasn't really using Replens properly e.g. every 3 days, sex or not. Once chemo is over, I am going to make a real effort to start that regime properly and see how it goes. I have also ordered the 'Yes' product and will give that a go too. If I find that when I start my Hormone Meds (don't know which one I will be on), that nothing is working, then I will ask about the topical oestrogen, but I guess that will be my last resort. I hate that I can't / don't want to give my hubby long hot kisses anymore due to a sore mouth and the idea of germs and we make do with a loving 'peck'. I will be glad when these SE's are over, I really will, but I know deep down, that my life, as I knew it, has changed forever and I will never completely be the person I was. Some people might change for the better and make more of their lives, but to be honest, I was always that person that did make the most of their lives and lived it to the very fullest. I was an incredibly optimistic, cheerful, cheeky, loving, happy and positive person - but by the time I get out of this, I don't know who will be left. I still pretend to others that I'm more or less the same and maybe...one day, I will convince myself. Don't get me wrong, I am so grateful for my chance to live, but I do feel so much compassion for you all ... we have just taken what life has thrown at us with no choices, so much to deal with, so many changes. I have to believe my life will get better and some sort of normaility return... hope is everything... thank you for sharing your challenges - I don't feel alone!! Joyce xx ... View more

Thanks Yvonne - it's good to know I'm not the only one who can't find her libido... and you know, I do give myself a break, having to go through chemo, but I do wonder and worry that I will ever find it again... it must be out there somewhere! My husband is adorable and helps me feel attractive and confident, but I would like to show him how much I love him... we used to be at it all the time... I don't expect to invent the Karma Sutra now, but just to have painless loving would be a start... I guess we will find our way forward... thanks again.... Joyce xx ... View more

Ladies, this might be a difficult question, but it is something I have had on my mind for a couple of months now. My cancer was a result of hormonal changes (menopause) according to my Breast Consultant. I know many of you younger ladies have had a 'forced menopause' and that you have probably have had to deal with those side-effects almost instantly when you started chemo. Therefore any therapy with hormones e.g. HRT have to be ruled out completely. Now that we are nearing the end, some of us will have to take anti-hormone meds long term. Now my problem is accepting that my libido has almost completely gone and will probably stay gone during the years that I am on the meds and also even trying to be loving for the sake of my husband is difficult because of discomfort (dryness). Now I have used Replens... which has not been that great. The ones that appear to really help do have a small level of hormones e.g. Estring (a ring which you insert and retain for 3 months) but have seen on the Internet that the amount of hormone is so small that it might not be harmful to us? I'm not sure if this subject will be of interest to you and maybe I should consider putting this matter elsewhere on this website. I also apologise if anyone feels offended or uncomfortable with anything that I have written. My husband and I have a wonderful relationship and everything we have been through recently has actually brought us even closer mentally. However, I miss the physical loving side of our relationship and will do all I can to get it back when I am through the poison. I would be interested in your thoughts. Joyce xx ... View more

Glad you are feeling better Morwenna. I have to say that you look really good in your photo. I had hair down to my waist when I was diagnosed and had NEVER had even a short hairstyle. I do accept my baldness, my head and face shape is not as nice as yours but I feel comfortable and confident in my own skin. one neighbour who didn't know I was ill thought I had shaved my head 'for fashion'.. that made me smile... This third taxotere has been much kinder than the last two, not sure why. I have developed sore, teary, puffy eyes this time and have bright red rashes on my cheekbones, but apart from that I feel okay really. I feel so much better now that I am coming to the end of this horrible road - one more to go. I have never felt so ill in my life and I will always have empathy for anyone embarking on this journey. Take care all you Ladies out there and don't party too hard this weekend - actually, sod it, party as hard as you want to, just take care of yourself, be kind to yourself and enjoy the little things in life - whatever they may be... Joyce xx ... View more

Oh Morwenna, stay focused.. you are getting there. I guess your weekly Tax is catching up with you with the layering of SE's. I had my third Taxotere last Thursday and am getting into a roll of pain and tiredness now and all the other things you describe, but if I can get through the next 5 days, I will be okay and with one more session to go in 3 weeks, I feel like I can really do this. From all you have said in your posts, you have been one of the most active, pro-active, positive and upbeat members of the gang here. I wish I could send you some strength after all the encouragement you have given to others. Personally, I think you should fly when you are feeling up to it. The flight will be around 7.5 hrs - 8 hrs? You could take some meds and try to sleep. Atleast you will be with family when you arrive and the NHS will always look after you if you need anything. Think of all the lovely Brit food ythat you can catch up on!! I used to live in the US on the East and West Coasts and know what it's like to be an Expat missing home. I wish I could visit as I have some wonderful friends there who are like family, but I don't think my insurance would cover me at the moment. If you are flying BA out of Heathrow, then pm me and I will do what I can to help you get a good seat. I don't know anyone at Air Canada though!! Rhonda Girl, you are amazing - I too hope to have perky boobs again - one at a time! My surgery will be 4 weeks after my last chemo and then rads after that. Love to all, Joyce xx ... View more

I insisted on an echo-gram, had one today and my heart and liver are strong... to be honest I was worried after being beaten up so badly by Taxotere (paxlitel)... but now I feel like a Lioness... I have two more chemos to go. It might not be pretty but I WILL win this fight.. I have to.. we all have to...hugs and kisses to all of you... Joyce xx ... View more

I insisted on an echo-gram, had one today and my heart and liver are strong... to be honest I was worried after being beaten up so badly by Taxotere (paxlitel)... but now I feel like a Lioness... I have two more chemos to go. It might not be pretty but I WILL win this fight.. I have to.. we all have to...hugs and kisses to all of you... Joyce xx ... View more

Thanks Sarah.... they deleted my post... what a naughty girl I am!! Ha ha! Hope you have a great day tomorrow! Jxx ... View more

Hello Ladies... well my first (and last) Taxol was not a great success for SE's. It wrestled me to the floor and beat me up, so that I could hardly walk. So here I am, three weeks later and going in for Docitaxol instead today. I hope it will be kinder to me. I will let you know in 3 to 4 days. Was aghast to see that they had doubled my steroids and have had to be very assertive to get it back down to 8mg a day. The steroids affect my mood way too much. I was depressed and unreasonable with dark thoughts with 8mg, so when I saw that they expected me to have 16mg a day, I seriously questioned it. I believe half my fight is in my head and try hard to push away negative thoughts and feelings. Wish me luck... after today I have 2 more chemos to go, so I am getting there. Have a great day ladies...! Joyce x ... View more

Morwenna - you are right - he is a Dick but also a 'Clever Dick' and knows his stuff, luckily my Breast Consultant is an Angel, a great listener and good at answering questions. Weird joint pains kicked in yesterday, some are like bad peiod pains or labour pains! It feels like nerve ending pains, because they jump around my body from head to toe. Hopefully won't last too long. Yvonne - your comment about your ONC with his eyes closed made me laugh out loud! However, I hope you get your treatment back on track, so you can get it out of the way and move forward. Rhonda - if anyone desrves a wonderful holiday in Bali - it is you. I have stopped all the 'treats' that I would never eat before chemo and hope to not gain any more weight. You look very slim in your photo... Took a trip to the 'Waiting for results' Forum - that was definitely my worst time too and I feel for these ladies, especially the ones that were diagnosed as cancer. How scary it all was... I feel I've come a long way since then, even though I have 3 sessions to go. Feeling informed is one of the most important aspects of the treatment, we ladies like to know what we are up against!! Wishing all January Jems a smooth journey forward.. Hugs, Joyce x ... View more

Hi Morwenna, no I am on 4 every 3 weeks, but like I say, I think once the 'feel good' steroids have worn off, I may develop SE's. They have given me a huge prescription for Ibuprofen... which is an indicator. I am not taking any anti-nauseau meds only the once a day acid-reflux - more for prevention, because I hated it when I had it on AC. I did request a full explanation why I was to be given Taxol as originally my regime was 6 x AC. My Oncologist does not like to be questioned (he's a 'shoulder patter' or 'toe tweaker'). When I asked him he said "This is the right cocktail for your type of breast cancer." and that I could choose between "life and death". Very nice. So I got all my answers from my Breast Colultant. He said that research has shown that by mixing AC or FEC and Taxol chemos, they get a better result in reducing the size of the cancer. I also got a chance to get answers to other questions that I had, which made me feel more informed and confident. It's so nice to feel well and relatively normal, even if it doesn't last long. I do have other side effects, which I consider non-medical and that is obviously hair loss, whch I have embraced and don't wear a wig, just a hat if I am cold, black nails, no eyelashes and rapidly diminishing eyebrows oh and I have gained quite a lot of weight, but I will deal with all that later.... as long as I can still look after my family in as normal way as possible, then I am happy... Joyce x ... View more

Had my first Taxol yesterday and have felt great! Even though I didn't get much sleep, I had an absolutely manic cleaning session today and did all my washing, took the dogs out for a long walk and cooked lampb chops, cauliflower cheese and roasted veg. Even felt like a glass of wine but didn't - mainly because I was put on anti-biotics for cystitis which developed 3 days ago. I know this feel might not last and it is down to the steroids, but it is a good start to the new regime, which I was so frightened of. There have been so many postive feelings coming through lately on January Jems, which is so nice. Rhondacat you are setting the pace and I admire you so much because you have managed to carry on working - that must have been difficult at times. I'll maybe be back in a few days moaning about joint pain or whatever, but for now, I feel so good. Nighty night ladies... Joyce x ... View more

Thank you for response Morwenna. I have emailed my Oncologist and Breast Consultant. I was originally told 6 x AC, surgery and then radiotherapy. Since then they changed the goal post and to be honest, whilst in my 'real life' I am quite happy to ask questions to get to the finer detail, my meetings with them have been when I'm lost in the chemo fog. I had a vague response in that some people find 6 x AC too much to bear, but I would rather have that and get it over and done with rather than deal with an unknown quantity. Sometimes, I wonder if I will come out of all this as the same person! Sometimes I wonder if my husband will tolerate me for much longer! I used to be a very patient, sweet, understanding and very forgiving person. Now, I feel like I don't know myself at all.. I have changed too much... I don't look the same, I don't act the same and don't feel the same... I hope I can find myself again... I was very pleased with how I had been dealing with the AC SE's.. but if this Tax is not kind to me.... then I WILL be stamping my foot! Very loudly too...! My Oncologist is quite hard to talk to at the best of times, I'm lucky to get 5 mins with him when I have chemo...he is always in such a damn hurry!! But, I will wrestle him to the ground if necessary to get an answer and if it's a good one - then fine, but it should not be because "some people" find AC x 6 too much!! Luckily for me, I have not been one of those people and just know I could get through just 2 more, if I were given the choice... I will let you know what he says... Sleep well lovely ladies and sweet dreams for us all.... Joyce x ... View more

I haven't written anything for a long time, but do check-in for a read and think about you all every single day and hope that you are all okay. I have had 4 AC and now face 4 x Taxol (first one coming on Monday). I don't know why they have chosen this path instead of 6 x AC and then surgery. I have sort of got used to the AC (the Devil I know) and have got into a routine in dealing with the SE's. Now I feel like I have to start again and have know idea what the SE's of Taxol will mean for me (some sound horrendous) also is it true that you have to increase your Steroid dose with Taxol? Well if so, then that will be a pile of crap cos the limited Steroids that I have had with the AC has given me a bloated face, tummy, increased appetite (I have put on a lot of weight) and on a couple of days, I feel really depressed and can become quite unreasonable. So, based on the following info 1)Dealt well with AC side effects 2)Invasive cancer over half it's orginal size (was 3cm) - why do I have to go on Taxol? If someone has any idea then please let me know. I really wish all you ladies all the best, you are doing so well. Hugs, Joyce ... View more

Hello lovely ladies - This 3rd chemo has kicked my butt..feel really awful. I had it Monday, but am hopeful things will get better over the next few days. Goodluck to us all going through this... Hugs, Joyce x ... View more

Two things happened today - I got the results of my lymph node biopsy and there is nothing lurking there - so very, very happy ... secondly I had my hair cut very short - I feel very empowered after having long, hair all my life. Shame it will not last but I have some great, crazy wigs on order from Ebay and am planning a 'wiggy girls night out' in the near future. Take care all you lovely ladies... J xx ... View more

Welcome Onegirl! We started our first chemo the same day!.... Hope you are doing okay... I can't really complain, nauseous at times and a bit tired... but plodding through.. I have 5 more chemo, then breast surgery, radiotherapy then meds. Good luck Honey, you are the same age as one of my daughters and sarah.. you are the same age as my oldest son - good luck to you both and all us January Jems. I said to my husband the other day that I feel glad to go be having chemo in 2013 and not 10, 15 or 20 years ago as they really have nailed alot of the nastiness that surround having chemo... All you Ladies out there, have a good weekend... Jxx ... View more