Breast Cancer Now Forum

Hello all you lovely ladies and thank you so much for all of your advice. Shi your description of ‘slime mouth’ made me laugh - a very apt name for my mouth at the moment. I have an appointment with my oncologist on Wed so will definitely tell him everything. I am not feeling so achey thank goodness and have a bit more energy. Tara so pleased you have almost finished this bit of your treatment, good luck with the radiotherapy - please let us know how it goes. Have a good week everyone xxxx ... View more

Heather I am sorry to hear what a tough time you are having with Docetaxel, I had my first cycle of it last week and have felt so poorly. Like you I didn’t want to post that as some people cope fine on it. I have had awful bone pain and the foul taste in my mouth has meant I don’t want to eat (which is most unlike me!). I have the neuropathy in my fingers and toes which feels strange. Did you start to feel better later in the cycle? With the EC I would start to feel more myself around Day 10 so am hoping this will be similar. My oncologist said they would try me on a full dose of Docetaxel and reduce if necessary for the next 2, I feel I ought to take everything offered but never imagined I would feel this rough.  I have sent my children back to school as my youngest son’s additional needs make rest for me very difficult when he is at home - within a week he had a nasty cold but luckily I seem to have avoided catching it. Both children strip off at the door and shower before coming near me. My eldest son has moved back to London for university and I don’t think we will be able to see him until my treatment is over, so probably Christmas time, I miss him so much. Sending all of you brave ladies love and strength, Helen xxx ... View more

Oh Emma, that is so tough, I am sorry you will miss his first day at school, hopefully there will be many more times that you can go in with him in the future. I saw my oncologist yesterday and he felt sending our son back to school was a risk worth taking as it will be respite for me. He recommended that we strip his clothes off and  shower him as soon as he gets home, and it will be the same for our teenage daughter who is in her last year of A levels. Sending you all best wishes and hope that your son has a happy time at school. Xxx ... View more

Thanks for taking the time to reply Claudia, I really appreciate it. I think you are right about it being compulsory, although I am sure schools would be sympathetic to anyone that is high risk. I think I need to weigh up the risk with everyone’s mental health. I hope your son enjoys secondary school and it goes well for him xxx ... View more

Hi all, sorry to hear about your temp Amy, it’s not as if we like going for our sessions but to go and not have it must have been so frustrating, don’t blame you for being grumpy.  Had my last (hopefully) EC yesterday, different nurse, super efficient and I was out in an hour, last time I was there for 4 hours. But have been really headachey and nauseous since, not sure if it was the speed or the heat.  On to Docetaxyl in September, not sure how that will be. Hoping you are all managing to find some shade and rest xxx ... View more

Hi Tara, sending you a big hug, sounds like you are finding things especially tough at the moment, I find just when I feel I have got used to an aspect of this, something else rears it’s ugly head. Re. not wearing your wig, I have bought some hat/turban things from Simply Wigs and Annabandana, the bamboo ones feel really cool in this hot weather. But of course go without anything too, I am sure most people will understand and it is their problem if they don’t. And I am sure your husband loves you for who you are (I know you know that!) Lots of love, Helen xxx ... View more

Hi Tara, sorry had a busy few days and no chance to reply, yes your home life does sound like mine with similar issues, my youngest has huge issues with self regulation and gets very angry with meltdowns and aggressive behaviour. Seeing me with no hair has been the latest challenge for him. I hope your boys enjoyed their caravan holiday and you were ok on your own for the night. I have two teenagers too, my eldest son is 19 and takes it all in his stride (or seems to, I think he bottles it all up). My daughter is 17 and she has been an incredible support but it is weighing very heavily on her, her mental health is definitely suffering with my illness and lockdown isolation too. I am trying to get her some counselling but it’s not easy in the current situation. It’s an additional area of stress Isn’t it, as mums and partners we are so used to worrying about everyone else, so we try to be strong even with this horrible illness and all the side effects from the treatment.  Anyway, today has been a good day, I finally went for my prosthesis fitting at the hospital and I am so pleased with it! Worth waiting for, it feels really natural and comfortable, so much better than the softie I’ve been wearing for 4 months. At the moment, I can’t see myself opting for reconstruction when my treatment is finished, I found the surgery so traumatic and recovery took a while - I wondered how you were all feeling about reconstruction? Best wishes to all you amazing women xxxx   ... View more

Hello lovely ladies, hope you are enjoying the sunshine, even if the temperatures are a bit much. Tara, please don’t apologise for joining, I love all your posts and your positivity is inspiring. NB, I am doing better this time around, thank you for asking - less headachey  and nausea has been less too, although I think the filigrastim injections made me feel more sick in the evenings - oh how I hate doing those injections each time! I have found I am more tired this time, but my home life is not terribly restful as I have a seven year old with additional needs who is full on, so that may be partly the reason. I have got bad ulcers on the sides of my tongue, so the hospital have given me some mouthwash to treat them, as they were making it hard to eat and talk! Sending you all hugs, enjoy your weekends all, Helen xxx ... View more

Hi Amy, I just wanted to reassure you about the picc line. I had mine put in just before my first round of EC, it was fairly straightforward to have done - the radiographer looks at your veins using ultrasound, then a fine tube is inserted under local anaesthetic and then they x-ray you to check it is in the right place. It didn’t hurt at all, I just had some bruising afterwards but my veins were a bit tricky to access apparently. The picc line is on the inside of the upper arm and covered with a dressing so doesn’t get in the way. It does need flushing every 7-10 days which is just a small amount of Saline fluid squirted in.  Having the line makes it much easier every time they need to take blood etc. and my chemo apparently makes your veins collapse (lovely!) so cannulas would be hard to insert.  I bought myself a waterproof cover so that I could shower but some hospitals provide these I think. Mine was about £18 on Amazon and works brilliantly, it is stretchy rubber like a swimming hat for the arm! I can send you details if you want. I had my blood test this morn and back in for my second chemo tomorrow. I hope all goes smoothly for you on Wednesday and that you are having a bit of relaxation in the sun this afternoon.  Very best wishes, Helen xxx   ... View more

Thanks for your advice Shi, I will do.  I am always worried about troubling people unnecessarily but I know I need to get over that!  Plus the oncology nurses are always so lovely and reasssuring.  Feeling a bit better today so the antibiotics obviously work fast. Hope the sun is shining where you are xxx ... View more

Thank you for your message Shi, I rang the hospital because I was dancing around in agony later and couldn’t sit down! Burst into tears on the phone as I was telling the oncology nurse how painful it was. She organised a prescription of Trimethoprim and I am starting to feel slightly better already (I can now sit down!). Hope this doesn’t happen every chemo session. Thanks again and have a lovely weekend xxx ... View more

Tara thanks so much for all your advice, very much appreciated. I have different anti-sickness tablets, they seem to have worked in that I have felt nauseous but not actually been sick. I have been wearing the acupressure travel wristbands on the advice of the chemo nurse, can’t decide if they make a difference but worth a try!  I am finding the headache and absolute exhaustion hardest to cope with, and the awful taste in my mouth. The drinking masses of water is definitely the best tip thank you.   I hope you aren’t feeling too grotty after Thursday, do you feel it is worse second time around or the same? Sending everyone best wishes xxxx ... View more

Hi Tara, I hope you are having a good week. I have found your posts really helpful thank you. I had my first chemo session this morning, of EC, and have the headache you describe and feel slightly nauseous too. Do you mind me asking how long this lasted for you? Thanks! Helen xxx ... View more

Hi Kate, thanks for your message and kind words, much appreciated.  Had my first chemo session this morning, not too bad all in all. I have a slight headache and feel tired but I didn’t sleep much last night.  Have a large bag of pills to take at various times and need to start doing the tummy injections tomorrow - I feel quite nervous about doing that as I am rather squeamish, the nurse said it is easy but she does them every day! Yes the whole decision about sending the children back to school is so difficult, I know my 17 year old will be very careful and think it would be good for her mental health to go back in September, but my 7 year old is a completely different matter! He is a nightmare to get hands washed and doesn’t really understand social distancing. I think I will see what the infection figures are by then and then decide. Would certainly be better for my mental health to have him back in school! All best wishes, Helen xxx ... View more

Hello all, it’s good to meet you all although obviously I wish none of us were here! I’m Helen, I’m 51, I was diagnosed in mid Feb with a 30mm ductal carcinoma, Grade 2, HER2 negative, ER positive. Due to Covid and waiting for scans, there was a delay in my surgery, but I eventually had a mastectomy in April. Unfortunately the lump turned out to be 100mm and 1 of my lymph nodes was positive, so I had to go back in for an axillary node clearance in May, in total 4 out of 17 nodes removed were positive. So I am starting chemo  on 30th June, 3 cycles of EC and then 3 cycles of T, 3 weeks apart, followed by radiotherapy. I had a PICC line put in on Friday which isn’t too bad although I am reacting slightly to the plastic dressing, very itchy, so will need to ask for a different dressing when I go in on Tuesday. I have 3 children, my eldest son is 19 and home from uni in London, my daughter is 17 and doing A levels (from home obviously) and my youngest son is 7, he has complex learning disabilities and behavioural issues, he can’t go back to school as he wouldn’t cope with the restrictions and could put me at risk. It has been very hard having him off school all this time while trying to recover from my ops. I decided not to use the cold cap so have ordered a couple of turban/hats in funky patterns made of bamboo fabric as apparently it’s very soft and cool to wear. My son is very excited about the prospect of shaving my hair off so I will be bald like Daddy! Anyway, thanks for reading all this, I wish you all the very best on this journey. I have found this forum an invaluable support over the last few months and am sure this group will be too. Helen xxx ... View more

Thank you both so much, have ordered the book and will try your exercise tip as often as possible! So appreciate all your support xxx ... View more

Hello lovely new friends, just thought I would update you on the results of my Axillary lymph node removal - only 3 nodes were positive out of 17 removed, which was better news than I was expecting. My drain came out last Tuesday and I am feeling much more myself. My arm feels very odd, sort of numb but painful at the same time, but the surgeon did warn me that was likely. I am doing my exercises which are slowly getting easier. So next steps are 4-6 months of chemo followed by radiotherapy, I am waiting for my appointment with the oncologist to confirm the details but think I will be starting in July. I don’t know if this means I can send my children back to school at some point this year or whether we will need to completely isolate until I am less vulnerable, I guess the oncologist will be able to advise me. I hope you and your loved ones are keeping safe and well, very best wishes to you all, Helen xx ... View more

Thanks Suki, I have managed to keep it hidden so far, thank goodness as he is having a very angry unsettled day as he can’t properly process what is going on poor love. I am surprised that I am finding this much more uncomfortable than the mastectomy, I guess it’s the position of the wound and drain. Am propped up in bed with pillows all around me as advised by another lovely lady on this group. Anyway, will be thinking of you on Thursday, very best wishes xxxx ... View more