Hi Pippi, glad you’ve found us! I think how you are feeling is completely normal! I was diagnosed in april and had masectmast and now havjng chemo followed more surgery then rads. I havehad every range of emotions and still do, some good some downright morbid. This is no easy road and i thirnk uou have to allow your body to do its thing… But dont be ashamed to seek some help, speak to your gp, your nurse or MacMillan rhere is help out there, its not always easy to explajn how uou feel to those closest to you ans sometimes talking to a stranger may help, give yourself time, talk to us on here we’ve all had meltdow and felt adrift too and will again. Look after yourself
Hi Kip, Feenix and Claire
Good to hear you are coping ok with this cycles side effects Kip. Since finishing chemo I have noticed my toes are numb. I have looked it up and apparently it does get better but like the hair, nails and taste buds it all takes time! Not good for someone as impatient as me!!
Very Funky shoes Jean! Sounds like you had a good day in Lincoln and did a fair amount of walking. I admire you even trying the hula hooping, 2 mins is great, I’d be lucky if I can do 2 seconds. My youngest daughter used to hoop for hours when she was a little girl, not a weighted one obviously! She could probably still do it now if she could get out of bed! I’ve just got a new shampoo, conditioner and mouse. Recommended by the hairdresser but it is supposed to help hair grow! I cold capped so look like I have hair but have a patch that went bald on top and the sides and the back looks ok butbis a lot thinner than before. It is all growing back now but obviously not fast enough! ?
Clare hope you are sleeping better now. Did you manage to change your chemo location and oncologist? When do you start the next half? Hope you are feeling ok and enjoying all se free time!
I’m doing ok apart from having to pace myself due to tiredness. Today I was able to completely do all of the post op exercises. I had been struggling with the one that helps with radiotherapy but today got my elbow to the floor! Yay!!
Hope everyone enjoys their Sunday afternoon. It’s just started to pour here, I’m cooking a roast so there is a real winter feeling. X
Yes I will try give myself more time and be kinder to myself.
It’s early days and I’m terrible and inpatient in not being able to do as I want.
Wish I didn’t have these horrible thoughts ?
Pippi try to just take things one step at a time, I know that’s not always easy. For now focus on you and recovering from the op. Look after yourself and let others look after you. Think about chemo when you know if you are having it. Kip is having chemo now and I finished in July so don’t hesitate to ask us any questions if you do have to have it. Take care xx
Yes I will try and take one step at a time. I have had chemo in the past and I know how horrible it is. But yes I won’t think too far ahead and get over my oo first.
Rationally I know I should be patient but often my mind works overtime and often runs away with me…
Tanks cdc that was nice to reply to my post especially that with your mum having had it twice and is doing fine. That really gives you hope. That’s great news for your mum!!!
One of my drains been removed 2 days post surgery and now I feel like a walking water bottle and am collecting fĺuid that has nowhere to get out. Been to A&E and they said to wait til tomorrow when the breast care nurses are back at work to go and see them. I hope they will aspirate some otherwise I will explode I’m sure ? xx
I’m also a second timer, 12 years apart. Like you a completely new and different type of breast cancer this time, same breast though. First time round just lost the nipple and a small amount of tissue plus 15 x radiotherapy sessions. This time mastectomy followed by a second op of ancillary node clearance and shave of the chest muscle to get clear margins and chemo. I don’t worry about it coming again because it was completely random that I had it once let alone twice as I have absolutely no family history (I’m it in my family).
Hope you’re not feeling too rough after your surgery although 2 days does seem a bit quick to get rid of a drain. Bloody things are an uncomfortable pain when you have them and it’s a relief when they’re gone but they do a job. Hopefully the sloshing will calm down and the fluid will disperse.
Hi Sally thanks for getting in touch. Yes it was 7 years for me when I had it the first time and never imagined it would return as a new primary. It was a real set back it makes you think that once you’ve had it it never quite leaves you and that’s why I feel like a ticking time bomb when or where is it going to hit next…
Anyway I’m glad it’s a new week and there are people that can have a look at my collection of fluid in that side. Maybe that’s completely normal and they will say that it will disappear in a few weeks and yes I hope they will take out these pesty remaining drains as they don’t collect much anyway and you are a bit hampered by them when moving around or even sleeping at night.
See what this week will bring ?
I’m pleased for you Claire that you have a new oncologist who seems to be listening, what a relief that must be. I am like you and fiull of admiration for the hula hoopers amongst us! I hope T goes well for you x
I saw my BCN today I thought just to go through my pathology report but she talked about lots of things one being tamoxifen. I didn’t think I was a candate for that as my oestrogen link was 5/8. I feel so disappointed that I will have to take a drug for 10 years. I thought it would all be over in May when I finish herceptin. Admittedly it’s not for certain as she said talk to my onc on wed about it but I feel she wouldn’t have gone through it with me if I wasn’t going to be put on it. She was in the MDT meeting on Tuesday when they discussed my results so she must know what’s happening.
I feel fed up that this is going to go on and on I suppose I should feel grateful that such good treatment is available .
Hope everyone else is ok xx
Michelle, I understand your fears re Tamoxofen. I am 8/8 ER+ so will be on something for many years. I have no idea what, or whether I am post or pre menopause now… no periods since beginning of chemo but that could come back I guess. How do they find out? I have so many questions for that part of treatment, didn’t even now about stuff for ovaries… crikey must get ahead of the game and make a Feenix style list!
I think I am just focusing on the end of chemo and surgery and then will take the bull by the horns and ask the next steps.
CDC - are the ovary supressant stuff becuase of family history or diagnosis?
@kip (Lurker from June 2018 chemo thread as so many on that thread had surgery before chemo.) I am 8/8 ER+ and pre menopause, and I was told at treatment plan meeting that they will not put me on Tamoxifen but instead shut down my ovaries with Zoladex, putting me into menopause, and then also give me letrozole to stop the other estrogen-producing tissue from making estrogen. Probably for 10 years (I was 46 at time of diagnosis – now 47), give or take.
Oh thanks Reddi & Feenix, guess I need to ask some questions! I don’t need the ovaries these days and certainly don’t want the oestrogen so what needs to be will be the way I go I guess!
CDC, my Mum never got to menopause as she had to have a hysterectomy before then so don’t know if she would have been early or late… I have had one period on chemo so far but was having them before so am guessing not menopausal as yet? Surely they have to know one way or the other before deciding on which drugs? Crikey lots to think about isn’t there!
Oh wow 81 thats amazing. My mum is 75 and so fit and active, she volunteers at a Salvation Army luncheon club for “pensioners” and then tells me how they had so many “old people” there… when she is one herself! She cooks 3 course lunch for 45, washes up and sets up tables! Wish I had her energy!
Hi Feenix, yes not too bad today, tongue stil not quite right but definately on the up I’d say. Very tired though but I have been working full time this week covering somebodys holiday. Could you let me know what the leaflet said about frequency of massaging what creams etc… I never really got any advice as to what/how I should be doing it, I just do my own thing but would be good to have some guidance. Is your scar improving? My bit under my arm is fatter at present, but it usually does that after chemo, it seems the chemo affects everything… overall it looks good tho. Tai Chi sounds like a good plan, after Xmas I want to start up some new fitness things, swimming if I can fit it in but not sure what else? Had thought about yoga, I’ve never done that either.
Hi everyone thanks for your comments on Tamoxifen, you have been helpful and supportive as always. I was very disappointed to find out I would be going on it as I wasn’t expecting it so in my mind this was all going to over by May.
I have since had a chat with a nurse at the cancer centre that I attend who was brilliant. A lot more knowledgeable and caring than the BCN at the hospital. She said they don’t test to see if you have gone through menopause as the test is unreliable. My last period was in January (chemo started in April). I was peri menapausal before all this started, got hot flushes and irregular periods. She explained that the first 6 weeks of tamoxifen are the worst but after that the se’s Can settle down. I am getting hot flushes now so I suppose as long as they don’t get worse what difference does it make? I have decided to give it a go for 2 months and see how I get on.
I’m sorry to see you have family links with breast cancer Claire, although your mum sounds like she’s going well at 81! Do you or anyone here know if BC can be passed along the paternal line? My family is complicated but I have just been to lunch with my father and found out that 2 of my aunties have had breast cancer. These are actually half aunties as they have the same father as my father but a different mother. So if it is a genetic thing it would have had to have gone from my grandfather to my father to me. Should I tell this to my oncologist? Sorry if this is a stupid question!
Claire great to hear you are so much better on T than the previous chemo. I preferred T too it was only the steroids that messed me up!
Jean how was the Tai chi? I’ve never tried it but looks so beautiful when you see people doing it, there is a real peacefulness about it. I’m interested in how often they recommend to massage the scars too and has yours improved by doing so? My scars aren’t too bad considering they are a month old but I have been told to massage the scar tissue which I am doing only once or twice a day and it doesn’t seem to have made any difference.
Kip you are right there is so much to get our heads around! I’m sure I should be asking more but once again find myself just going with their advice.
I’ve gone from barely taking a paracetamol to being pumped full of toxins and radioactive chemicals, targeted drugs and now will be taking a drug everyday for the next 5 years! What happened?!
I am also planning a new fitness regime. I love running but have a problem with my hip which doesn’t seem to want to go away. I’ve got physio booked but will be devastated if I can’t run. In case I have to have a break from running I plan to start swimming after rads and also I want to row. Friends of mine are in a team and plan to enter a race in Venice in May, I would love to be there with them, we’ll see.
Well I am relaxing in a hotel room in Windsor waiting for my OH to come back from London. We are flying from Gatwick early so thought it easier to stay here. I’m so excited about having a break away. It would be nice but I guess impossible to forget the last few months have happened.
Happy weekend to all and once again thanks for being so supportive xx