Drummers widow, some people just don't get it. I'm still having a 2 hour nap every afternoon so you are not alone.
I have LGFB tonight so am excited for that and to see what kind of goodie bag I get.
Looking forwards to posts from those who had ops today and hoping all went well and that the healing process can begin now. My double mx is one week today and I'm starting to get nervous about that.
Dikat & Absolutelyannie - thinking of you today, wishing you both well with your surgery. Take care KC72 xx
I know I would definitely feel more isolated without the communication from you cyber buddies. I live a long way from my family, although I have kept in phone contact. This thread has definitely helped me to get through, knowing what to expect, has given me support and companionship. We are all in the same boat.
Big hug to the surgery girls today. We’re only a computer screen away!
Sending big hugs to those having surgery today, Ditkat I think it's a good call to have the few nodes removed now... I had mine done in 2 ops... My second ones were all clear and I wish I could have known.
Stuck at 14.
I understand what you’re saying but sometimes you just have to vent your spleen a bit on here. I would not wish this cancer on anyone but it would be nice if my family were a bit more understanding.
We could have a whole thread on upsetting things people say when they dont understand. My dad came to help with the kids and I got out some toys from the shed for them-3 days after last chemo, had to sit down and just sighed and said I was exhausted from that- he said 'from what you havent done anything!' He was shocked and just didnt realise what an effort every bit of movement takes at the mo. I had to go and have a little cry. It's so hard. Drummerswidow I suppose we have to remember we dont ever want our family to be able to understand, although of course your sister could be a little less insensitive.
Hugs everyone, such a lot happening at the mo. Xx
When your sister phones to see how you are and you tell her you’re very tired. The reply is ‘Well you’re always tired at the moment ‘. Also explain that it could take a year to get over everything and the reply is ‘A Year! That’s going to be horrendous for us!’
Thanks sis! #don’tphonesisforafewdays! I must be giving them a hard time having cancer and going through chemo. Never mind she’s got two holidays before the end of June 🙄🙄🙄🙄
Good luck Dikat and everyone else having surgery.
Sunnydaze I had muscle sparing tram- really happy with result but yeah ready to lose weight. 🙂
Thank you to all you lovely ladies for the good wishes for tomorrow. Will be glad when it’s over. Hopefully will be home by this time tomorrow 💕
Good luck absolutelyannie 💕
Dikat just popped over from February to wish you all the luck for tomorrow. It will soon be over xx
That sounds like a stressful morning. I honestly think you have made the right call and with a good outcome - only a few nodes taken. Hopefully, you won’t have to go back in to theatre.
Sending both you and Annie loads of luck for tomorrow. Will be thinking of you xx
Stuck at 14. There’s quite a lot of info about the 5:2 diet on the net. The guy who devised it is a UK Dr (Michael Mosley)and there are quite a lot of clips on YouTube too.
Jayne, I don’t blame you for waiting and that local course sounds very good too. You’ll probably lose weight after surgery, in hospital, I know I did.
Oh,Stuck at 14 did you have a tram or a diep ? I had a diep and my belly has been a bit distended during chemo and my waist has thickened, but I’m on it with this weight loss thing. I feel so ugly, it’s actually motivating me.😂I’ve been drinking loads of water to help with the fluid retention and dandelion tea which is supposed to be a diuretic and help the kidneys and liver. Ha ha, I’m desperate to detox/lose weight/get fit.
What a horrible situation to be in! I have to say I think you have made the right decision. You have the option to have further surgery if necessary. Good luck for tomorrow we will be thinking of you xx
i know what you mean about making these decisions- we kind of expect to be told what they’re going to do rather than make a choice - but after my experience yesterday I think now it’s better to be more informed and to have an input. As you say it’s easier to go back and take more if needs be rather than take when it wasn’t necessary. I wish you all the best for tomorrow and will be thinking of you.
Hugs LB 🤗
Sounds like you have made a very sensible decision. How awful to be put in that position though 😣😍, and the day before the procedure too.
This time tomorrow it will all be over and hopefully you will be back home. Take care and know we are all thinking of you xx
Well done for dieting. I'm still putting on weight and struggling for motivation. Tbh I'm going to wait until after my surgery now although I have started having a healthy breakfast 😂😂 and am disappointed to still be gaining.
My hips hurt so much that I'm not doing much exercise either but again I'm going to wait until after surgery and then there is a local breast cancer specific exercise and lifestyle class that is just starting up that I am going to try. It's £3.30 for 2 hours and is exercise but also covers diet and other stuff so I'm quite excited for that.
I've booked onto HOPE in September too.
If I end up on herceptin injections instead of infusion I can get rid of this PICC line and start aqua aerobics too which I'd like to do. Well done you for swimming. Floating about in water sounds lush xx
Dikat that is so stressful. You will definitely find surgery easier than cheno though- whatever you end up having .
While we are on weight and surgery, did anyone else have diep/tram recon ? My weight is sitting under my boobs around the bottom of my rib cage and making me look quite deformed to be honest. I cant wait to slim down- has anyone a link to the 52 thing?
So, I had an appointment with my bc surgeon this morning. I thought she was just going to run through the difference in the surgery now the Oncologist had suggested I have full clearance instead of SNB as had been previously discussed but oh no it wasn’t that simple. Surgeon felt that I didn’t need full clearance at this stage so wanted me to make the decision. I could feel myself getting a little upset at this point because I didn’t want to make that decision, I wanted to be told what was best. She did apologise at this point and said I shouldn’t be in this position but the Oncologist and her where coming at it from 2 different viewpoints. She said he was coming at it from the point of how I presented in the first place and she was coming from the point of where I am now, according to the MRI report, following the chemo. She feels that although I had multiple nodes affected in the first place, if the MRI is suggesting this is no longer the case, it would be sensible for her to do the sampling first rather than risk the possibility of removing nodes that are not affected. She said after sampling if there is still evidence of cancer, she could do another op a few weeks later and then have the clearance. I know it might mean 2 operations but after much deliberation in the hospital cafe with my hubby we went back to see her and told her I would take this option. I hope I have made the right choice but feel at least I can have the further surgery to have them removed if necessary but there’s no putting something back that turned out to be fine in the first place. I think it makes it more confusing because I’ve had the chemo first. If it had been surgery first, guess the full clearance would have been done then! So I’m back to a day case tomorrow...I’m having a guide wire inserted in the morning then Sentinel node biopsy and lumpectomy in the afternoon and hopefully home tomorrow evening. Then who knows if I will need more a few weeks later once pathology results are back!!! Can’t take much more stress 🤪xx
I am glad you had a good break away. Think of it as a blessing re; delayed radiotherapy. Take this time to recover and enjoy a bit of me time, especially whilst the sun is shining.
Dikat, I’m intrigued. What surgery option are you going for?? I hope it’s an good one and that you’re feeling ok about it.
My Onc told me I could go swimming one month after my last chemo and I did! One month to the date! I checked on google too and it advised a month, apparently this gives enough time for your immunity to get back up to normal levels. I had the pool to myself, it’s a quiet Lesiure club. My treat to myself 😊
I didn’t go in the steam room or sauna, not because of infection risk, but because of the hot flushes I am having, I couldn’t face the heat.
I think hot tubs and jacuzzis are the things to avoid re; infection risk.
My Onc said I won’t be able to go swimming once radiotherapy starts due to the sensitivity of my skin and the chlorine reaction. So I’m making the most of it now. Going again on Friday and give sauna or steam room a shot.
I like my Onc, she’s female and quite understanding and enlightened.
I know what you mean about a spa day - I’m going to book one with a friend.
How long were you told to wait before swimming? I was advised not to have a spa day before radiotherapy starts due to risk of infection. I'm desperate to do something to relax/feel better but not fussed about massages- I've had enough hands on me with the appointments and OP and cannulation 😭 😞
I don’t know if there are any swimmers out there, but I went for the first time today😊 All of my muscles ached and were a bit jelly like, but what a difference it has made to my underarm node-less area. It feels so much less tight than before, really quite supple. I really recommend it and I think it’s supposed to help with lymphodema too.
Jayne, I started the 5:2 last week and lost 3lbs. It was really tough only eating 500 calories on the two fast days. I was so hungry, but more pleased with the weight loss. I want to lose a stone and a half. I found a good Facebook group on the 5:2 diet and that has definitely motivated me. Have you started dieting yet, or leaving it for a while?
Sorry to hear you had such a rough time after your last chemo maryKamille, you must be so glad it’s over. Glad you managed to get an enjoyable week away. Guess it will take some time for your body to recover from the neutropenic sepsis so probably a good thing than your RT has been delayed for now. Thanks for the info re surgery, everyone’s comments have been really useful although what I’m having done has changed again! Will post an update shortly 💕 xx
Thanks for the good wishes and the info about the wire, it’s really useful to hear it from someone that’s been there 💕xx
Hi absolutelyannie and all the rest of you in this thread!
I have been off the scene for a while as hospitalised after 6th Chemo with neutopenic sepsis. Ghastly. Then we went away for a week for a change of scene. Good. Now my course of Radiotherapy, which should have started yesterday, has been postponed as decided not well enough. I see my consultant again on 23rd of this month before they will give me new dates. (15 sessions over 3 weeks).
Dikat's hair growth is phenomenal! Such a lovely shaped head, too. Keep those photos coming, Dikat - you are inspiring us all.
As to surgery - which several of you seem to be facing now - I had that first and it was a day thing, too - a bit frightening in theory but it was fine - drain for 4 days and Macmillan provided a pretty little cloth shoulder bag to hold it and a v-shaped cushion for under the seat belt in the car. I got used to the drain pretty quickly - it hurts if you pull on it and that soon made me aware of it and to avoid that! I did the basic exercises a bit gingerly but I did them. Once the drain was out - I had to go back to the hospital for its removal - healing and flexibility became much easier. Surgery is way better than Chemo!
Good luck to everyone moving on with the next stage. The worst is over!
Poor you LB, we just have to trust the medical staff are doing what they believe is best for us. I think we have to throw everything we can at this blasted disease so it doesn't come back. Hope you feel better today.
DiKat and Absolutely Annie, I think you both mentioned having a positioning wire inserted before surgery. Just so you know what to expect (I didn't) the wire is about 3 or 4 inches long and mine was inserted whilst having a mammogram, you sit down for it and they use a special plate with a hole in it. But afterwards a lot of the wire is still sticking out of your boob. This might depend on our big your boobs are and how deep the lump is. Then they fashioned a drinking cup to stick over it and I walked back to the day unit with a surgical gown on my top half. I just wasn't expecting it to be sticking out so far. Good luck to both of you on tomorrow.
Hope everyone has good day today, at least the sun in shining, LB2 x
KC72 Thankyou for the quote on your coaster I have written it down 🤗
Thankyou to everyone for your kind, thoughtful comments - I don’t know what we’d do without all the support I feel from everyone on here - we’re all in this 💩 together and it helps so much.
Love and hugs LB 🤗🤗🤗
Sounds like your day was rubbish too. I hope you are feeling a bit more up beat today.
That’s amazing that your daughter conquered her fears and went into the exam. Definitely a reason to be a proud Mamma xx
Good morning LB,
Im not surprised you had a melt down. That’s exactly what I would have done too. I hope you’re feeling a little bit better today. Yesterday must have been truly awful for you. It is so hard when they shift the goal posts. You get your head around something and then they change the plan. I’m so sorry to hear that you have to have paclitaxel for 3 weeks. I’m glad Drummerswidow has been able to say that it’s not been too bad and I hope that has reassured you a little bit,
I think your team could have handled this better, it sounds like they haven’t communicated their intentions very clearly and I feel so sorry for you.
I know you are strong LB you have already been through so much. The quote on KC72’s coaster is great and I hope it helps because we have to dig deep so many times on this horrible journey.
sending you lots of gentle hugs LB. We are right here with you LB helping you get to the finish line.
I’m sorry you have had such a bad day yesterday. You have a rant. If you can’t have a rant here when can you!!!
This is my experience of Placlitaxel and PICC line.I had bad reactions to it too but not as bad as you. I had my surgery first but have an invasive cancer so knew they were throwing everything at it! They were going to stop my Paclitaxel and I went in to panic mode. In the end we agreed to give it to me weekly. I have to say it was more manageable as the dose was halved but you have more sessions. I agree that they have your best interests at heart. HOWEVER, at the end of the day it’s YOUR call on treatment but you must have enough information to be able to come to an informed decision. I hope that you don’t have a bad time this session and you don’t end up in hospital. Can you speak to your Breast cancer nurse. I have found my an invaluable help. They put a different slanted on things.
Regards the PICC line, I had mine inserted in December and had it taken out in April just after the end of my chemo. My veins were not man enough to cope with the chemo and also only had one arm to use cos of possible lymphoedema and infection risk to that arm. It was a bit of a pain with weekly dressings and being in the crook of my arm, but I am pleased that I had it in.
Bear in mind that we post here mainly when we have a problem, so you may have just seen negative responses about PICC lines but I was glad to have mine in. I don’t mean that comment in a bad way or to cause offence.
I really hope this this week is better for you. It sounds as if you are coming to the end of this stage of your treatment. Sending you are big hug xxx
Oh no LB, sorry you have had such a horrible day. It must have been so awful for you expecting one thing and being told you are to have something else. Bet you felt totally out of control! Yes they do have your best interests at heart but this situation could have been handled much better. Fingers crossed for you that everything is ok with the Paclitaxel.
You rant as much as you need to, it’s important you get things off your chest. Sending hugs 🤗 xxx
One day at a time honey.
I really struggled for my last 2 chemo sessions but now it's done I'm glad I did it. PICC line is a godsend. Really didn't want it but it was just so good not to need to be canulated each time and so easy taking blood too.
I also had a really crap day and spent half of it in tears. One of those days I think. Is it a full moon?
Dikat, hair looks great. Will be taking a pic of mine tomorrow so I can see how it looks. Such an easy thing to do I don't know why I didn't think of it before.
And my daughter sat her first GCSE today. I really didn't think her anxiety would let her go in and do it, but she employed every skill she has to get herself through the door. So proud, it's been a tough day for her too.
LB, sending you a massive virtual hug.
Yes what a **bleep**ty day for you. Of course your team have your best interests at heart but that doesn’t mean it’s not upsetting and confusing.
Whatever the outcome hang on in there you are nearly through the chemo and we are all behind you.
I’ve a coaster that I bought recently to remind me every day the following ‘remember you are braver than you believe, stronger than you feel and smarter than you think’. (But please don’t be offended with the smarter bit...that’s just for me for the days when I have a bit of a thick moment!!)
Well i’ve had a really horrible day - sorry to share a big moan 😕 as I reacted so badly to T - 2 sessions and hospitalised after each - once for dizziness and dehydration caused by the terrible oral thrush and the second for neutropenic fevers and low blood and sore mouth causing problems again 😕 my oncologist said that as my last scan - a couple of months ago had shown such a good reduction and some gone altogether, that we could stop the chemo. While I was in hospital she mentioned weekly paclitaxel but we never really had any information and when I spoke to my nurse on the telephone I told her I didn’t want to do weekly just do the Herceptin and Pertuzumab. So when I turned up today the chemo nurse tells me I’m having the paclitaxel and that it would be every week for 6 weeks I had a bit of a meltdown 🥴 the oncologist came and talked me into giving it a go today and see how bad or not the side effects are and to have it for 3 weeks as a compromise. I felt railroaded - I know it’s all in my best interest and they’re doing it for the right reasons but to be honest I just want to run away. Then they started talking PICC lines - no no no no don’t want - sigh 😔 sorry for the long rant but wanted to get it off my chest and poor hubby is not in fit state to help - I think he wants to run away too - but not with me 🤣🤣
hugs to all LB 🤗🤗🤗
I’m around. Been looking at the posts. I’m feeling a bit down at the moment. Been to see the the MacMillan Psychosocial Social Worker (!😳) today for some help and advice. Just feel so exhausted.
Thinking of all you ladies though xxx
Yes gocat I do go out like that. My wig makes me feel hot and itchy.
absolutelyannie I will be thinking of you too. I also have to have the wire put in. Still doesn’t feel real to me. I woke up with a sore throat yesterday and have been a bit sniffly...hope it doesn’t develop into anything more 😟xxx
Your hair is amazing. Mine seems to have stopped growing.
Good luck on Thursday - I will be thinking of you as I am being knocked out!!!!
I have to have a wire put in through Ultrasound and then trot off to Nuclear Medicine to have dye injected then trot back to the original clinic to sign my consent form.
only 48 hours to go.
Dikat, your hair is amazing 👍👍you don’t need your wig beautiful ❤️💕💕✨✨Shi xx
Wow super impressed with you hair growth Dikat. Think my chemo finished 2 days after you and still no sign of hair growth.
Do you go out like that or still wear your wig? I just wear scarves as couldnt get on with the wig.
Ha ha, wouldn’t exactly say comfortable and hate the fact it’s grey but I have taken the sod it approach.....this is me, like it or not
Thanks for adding your experiences. I have been given a little heart shaped cushion so will remember to take that with me. I also have a tote bag arriving tomorrow in case they don’t have any at the hospital. As well as seeing the surgeon tomorrow, I will be seeing my Macmillan nurse so guess she will give me the info re the exercises for lymph oedema. She has already given me the general post op ones. I’m intrigued as to how many nodes there will be to take as my MRI report from 26th March states “lymphadenopathy has resolved with benign appearing lymph nodes currently visible” When I was first told it had spread to my lymph nodes at diagnosis, I was just told multiple nodes were involved.
Thanks again xxxx
😮 Wow, that is amazing! I’m pleased for you. Do you feel comfortable going out and about now that you’ve got hair Dikat? Mine is growing but....
This is where I am with my hair growth Sunnydaze. As it started growing back on T, I guess this is equivalent to about 11 wks growth although I only finished chemo 5 wks ago 💕xxx
Great advice Kip👌 You have just jogged my memory and my hospital gave me a cotton bra and a heart shaped cushion too. So ladies, you may be lucky too and get these things for free.
Oh, I have been reading about hair growth today. Mine is growing slowly. There is a good article at the back of your LGFB booklet all about hair growth- incase you haven’t seen it, worth reading. Also hair grows back at the rate it did before. Mine wasn’t particularly fast growing. I used to get it cut about every 12 weeks...
Hi everyone, just been catching up on your thread..and saw your worries Ditkat so thought I'd add my experience too. I had a mastectomy and SNB nodes taken which turned out to show the three contained some cancer. I then had my chemo and once that was done I went back in to have the node clearance, so mine were two separate ops. When I had my mastectomy I came home with a drain in which I was dreading but actually it was fine, the hospital gave me a little bag to carry it it which I could pop over my shoulder. I think the drain was in for about 4 days and the nurse came to me to remove it (which didn't hurt at all). I was given exercises to do from the day after op, which by the way was a day case, I went down to theatre at 9am and was home by 3pm, but it depends if you are having recon at the same time I think, I didn't. Like the others have said a cushion to pop under the seatbelt is a must, some hospitals will give you little heart shaped ones to use, they are really good for popping under your arm during the day. I was told to keep some pressure on the wound so that the scar flattened and wore a soft bralet straight away to help. The exercises are very important to get your arm/shoulder moving again, but take it gently to begin with. When I went in to the clearance they were able to re-open the original scar and gain access from there, my scar goes across the breast and stops just were my bra stops near my armpit. The ANC clearance which was of levels 1 and 2 was again a day case, in at 9 home at about 3 again with a drain. This one stayed a bit longer but not really a problem, even went to the theatre with it tucked into a little handbag.. was a bit worried I may get searched and they would wonder what on earth it was! I only had 4 nodes in those levels, although chemo could have destroyed some but I was told everyone is different. I know you are worried about lymphodema and cording etc. I did have some cording but I was told to massage it and "twang it like a guitar" and it cleared up quite quickly. I have developed a slight lymphodema.. I have a sleeve to wear but only when gardening or doing exercise and my arm really doesn't look any different, you get given some more arm exercises to do for that which are similar to the op ones and I do them twice a day, only takes a few minutes and like the others said, helps to stretch out the arm too. You will have some numbness down you arm and my armpit is completely numb but you get used to it and I forget all about until I go to shave my armpit (which doesn't actually grow much hair at all.. every cloud etc). Its so worrying when you are waiting for the operation to come but really it was so much easier that then chemo.. I think once you've done that you can do anything.
Dikat and absolutelyannie, a comfy cushion from home does the trick for your seat belt. A small shopping bag, ideally canvas ( one that you fold up and keep in your handbag) is fine for your drain.
Jayne, good luck. I had to go past the chemo unit the other day and every vein in my body was saying no!!! I understand your trauma x
Stuck at 14,🛎🛎🛎🛎 Well done for completing your last chemo 😍😍😍😍. I hope the se’s are ok.
G, I hope you are feeling ok too? Sending you both lots of healing.
I have first HP this morning at 11.30. Absolutely dreading going back to the chemo unit. Its like my subconscious thinks I'm going for more proper chemo and just doesn't want to go. Going alone too. Mind over matter....
Echo getting a Vshaped pillow and something squashy you can put between your chest and the seatbelt (I used a towel). I didn't have anything to put the drain into, I just carried it around. Only had it in for 2 days at home, then they took it out. I was quite freaked by the idea of being home with a drain, but it was fine.