How lovely are your in laws being there for you and your family, you are very lucky. It’s only 3 weeks and sure it will fly by! I know a lady from my unit going for radio and they had evening appointments (she went at 6pm) so maybe that could be a option and your husband could work early and finish early for you or even grandparents can watch them in the garden for you as long as the weather Holds our and continues to be lovely. Everyone I have spoken to have said it’s a breeze especially after chemo and your surgery so I’ll be thinking of you.
Met with breast consultant and my surgery is getting split into two, 1st to take out the BC and sential node, and then 2-3 weeks later after histology and fingers crossed clear margins going to do the reconstruction part (LICAP, using my fat from my back but not the muscle and thanks to lockdown their is plenty there 😂😂) I think everything is starting to go back to normal , think masks and gloves will remain in place for consultations until a vaccine is available but that’s ok with me it hasn’t changed the care I have received. Jem 🌈🥰 xxx
The end of chemo, well done Jem!! Hopefully you've had loads of shrinkage 👍🍾👏👏👏
Let us know when you've decided on what surgery and when it is. In the meantime rest up you earned it 💪💪😘
Awww excellent news Jem, it really is a great feeling. I said after my last one that I was going to embrace the side effects as it would be the last lot o would have to endure, def made it easier.
Have you decided on a surgery? Hopefully be a better kind of normal at the end of June.
they had just reduced the visiting times when I was in hosp but I was only home a couple of days when visiting stopped all together. I don’t think o could have coped almost 3 weeks without seeing the family. Although, like everything else with this journey, u just put ur head down and get on with it.
Radio is a bit of a pest as my hubby is away working and I have the 2 small kids at home. So planning sitters in the current climate is not easy. We r having to take 2 cars to the hosp, me in one with the kids and the other my in-laws. I leave the keys with the in-laws and they stand outside my car and watch the kids from there. What else can you do 🤷🏻♀️ Xx
Awwww ladies look how far we have all come since the beginning of the year.
So happy that you are coping with EC lilyb84 and handling it like a boss, the end is nearly there. I finished my last chemo today 🎉🍾 and have had a very emotional and overwhelming day, been on a rollercoaster and cried all day! Littlest thing setting me off and am normally not emotional. I rang the celebration bell in the hospital with all the nurses and they allowed my husband to come into to watch me. It’s a great feeling once you finish a stage! Onward to surgery for me at the end of June. Sending you lots of love and hugs for these final few chemo , you can do it!!
lefteye84 so proud that your moving onto radio! You’ll smash it like chemo and at least the roads are a bit quieter so the journey won’t be as gruelling, download a couple of good albums and enjoy the peace. So happy that you are now recovering from your surgery, it was such a major surgery and your body is just taking it’s time to recover, this will all be a distance memory soon enough!
Shablah as so sorry to hear that some of your appointments have been cancelled, I have been lucky and just had a couple of telephone conversations with my oncologist but still going into see my breast consultant to plan the surgery think we will start to see things go back to normal my chemo unit said they are slowly getting back to full capacity too!
thinking of you all in your next steps , so glad we formed this little group as o love hearing all your updates 🌈🎉
That would of been better as I’m an hour drive to the hosp and an hour drive back 🙄 nevermind, it’s only 15 times 😂
Thanks, I will do. Hope you have a nice weekend xx
I'm sure you'll be fine. The longest part is the radiographers getting you lined up for it. I'm surprised you're not being given the 5 day larger doses.
Good luck with your appointment too, hope it is just necrosis. Let us know how you get on xx
Aww that’s good that he/she done a great job.
And scarring is fading. Yeah left side too. That’s me all marked up for it. Just a countdown now to get started xx
I had a lumpectomy so I still have my breast. I must admit that the surgeon has done a really good job, my scars are healing really well, one on my nipple is barely noticeable. The wire they put in has left another scar which is small then I have the lymph nodes biopsy scar which is by far the most irritating and has taken a really long time to heal. The radiotherapy was fine. Mine is on the left so I had to hold my breath to move my heart out of the way, once you get used to it, it's fine. What side is yours ?
How did u find radiotherapy?
Aww hopefully not too long till you get to wave goodbye to them. That’s a pest about those appts being cancelled if that’s what u are waiting for.
What surgery did you have?
I have a small lump came up, surgeon seen it so I’m back to the breast clinic on Monday for ultrasound and poss biopsy. Although as surgeon has said I have no breast tissue left, it will give me peace of mind. They are pretty sure it’s fat necrosis.
I'm supposedly done. I finished radiotherapy at the end of Feb, but had a lump come up in March, had an ultrasound and was poked about by a surgeon they said it was tissue damage from the radiotherapy. I still have to go to see an oncologist, I'm hoping to be signed off or discharged whatever you call it but I've heard different things about being discharged because I'm on Tamoxifen. I had a phone call from one of the oncologists, I thought that would be it and she would sign me off but she said I still have to be seen but she couldn't give me a reason why. She also said I need another appointment with the surgeon. So hopefully after those appointments, whenever they will be I will be just yearly mammograms 🤞
Aww, it’s a great feeling to get past the half way mark. How’s your arm? That’s a fair sized blood clot. The PICC is great, I had one in after getting my DIEP, I ended up with an infection and my veins were shot. I was dreading getting it out in but it was actually no problems. It will be a wait off your shoulders having that in instead.
I defo found the docetaxel harder.
Yeah all good to go, start radio 2 weeks today. I’m getting my full 15 sessions. I believe in some places in England it’s 5 sessions now.
I still go in every 3 weeks for my herceptin injection, zoledex every 4 weeks and zometa 6 monthly. Still waiting to hear what tab I will be on xx
Lefteye sorry to hear you've been affected by covid too. Hopefully your rads can go ahead! The end is in sight! xx
Sounds like you've had a tough time with the blood clot, sounds nasty. Only 3 more chemos left that's really great news. Almost there. Keep looking forwards XX
Thank you, at the beginning u never think u are going to get to this part and finally I’m starting to see the light at the end of the tunnel.
what stage of treatment are you at? Xx
Great news lefty, you've done all the hard parts not long before the end of treatment, hope your wound heals soon, good luck for the radiotherapy xx
Sorry to hear about your appointments shablah, that's rubbish. I haven't had anything cancelled, just doing it all by phone mostly.
I've done 5 of 8 rounds of chemo, started docetaxel with pertuzumab and trastuzumab on 11/12 May. My arm was very painful and turned out I had a 14cm blood clot (yay) so they put a PICC in straight away. Much prefer it to cannulas which were making me very anxious (and the pain of course!).
I've found docetaxel MUCH harder than EC so far, felt awful for about 11 days, but am in the third week now and feeling mostly much better.
Hope your appointments are back on again soon xx
How you doing? That’s a pest about appointments. None of mine have been cancelled so far.
My recovery from my DIEP has taken an age, still have a small wound and that’s been since my surgery at the beginning of March. Seen surgeon and he said in an ideal world I would have had another washout due to the Seroma but because of covid it’s not possible 🙄 just finished a course of 2 antibiotics too due to it.
had an appt yesterday at the radio dept for pre treatment planning. So they are happy that the wound is small and I will start my 15 sessions of radiotherapy in 2 weeks time.
How are all you ladies getting on?
Just checking in seeing how everyone is doing, well I hope. All my appointments were and have been cancelled not sure when they will be happening, hopefully with the lockdown now starting to ease a bit they will be soon. Hope you are all doing well 😘🌈
Thanks Jem, yes, they just told me I'll be in I we two days - pertuzumab the first day and wait for an hours, the trastuzumab and docetaxel the second day and wait for 6 hours. I'm also going to need a PICC line as my veins were reluctant today! Good thing as I'm getting increasingly squeamish and nervous about cannulas and needles as the weeks go on...
Glad you have a slot sorted with Asda, it's such a weight off knowing you can get food! I've definitely taken it too much for granted in the past xx
Glad to hear everything is moving in the right direction for you. That is great news it's shrank 4cm,u hopefully you'll end up with a lumpectomy and/or a mammoplasty 🤞
Yes your right about the hairdressers, they are going to be making a mint once everything returns to normal 😂
Enjoy the sunshine X 😎
Lilyb84 great news about the shrinkage, EC is great for results!!
Am currently on trastuzumab and pertuzumab too and the first time you have them you have to have them over 1hr and 1.5 hours (I was in the hospital for 6hours the first week so take lots of snacks!) but after that they give them quicker but still on my triple week I can be in the hospital for 4-5 hours so just a heads up!
i got my priority slot at the Asda and it lets me reoccurs it every week so we have a sat morning delivery which had been a gods send, and hubby only goes the little Londis for bread and milk and bits that we need.
so happy that it turned out to be scar tissue, think after going through this any lump or bump and we’ll all be at the doctors! Defo makes you realise to be extra vigilant with our health!
The Side effects on taxol has been really minimal (mouth ulcers and nose bleeding) being main ones and these are not constantly and easy to treat. My hair is even growing back on taxol, such a small thing but massive in my world as losing hair had to be the lowest point of all the treatment , just won’t be able to get a appointment in hairdressers when i need it coloured and cut due to the whole of the UK trying to get appointments!
Before moving onto taxol I had good shrinkage from EC (from 6cm to 2cm) and since on taxol and my hormone therapy it’s feels like it’s gone even smaller but hoping my oncologist will confirm on Wednesday (mine is telephone call not going into hospital) that I’ll be having another MRI within the next couple of weeks to confirm the actual size before am back to see breast consultant.
Surgery is provisionally booked for end of June at the moment, and hoping that it all still goes to plan, spoke to BCN and she confirmed still down to go ahead at the minute but am not holding my breath! Same about going for appointments, I have my PICC and bloods done every Tuesday and chemo every Wednesday, it’s like a day trip leaving the house and making a effect! 😂😂
Take care all, keep positive... we can do this! 🌈🌈🌈 and enjoy the sun! How funny since being in lockdown we’ve had the best weather in March / April ☀️☀️☀️ Xxx
Thanks for replying. Glad to hear you're still getting your treatment and getting out a bit. Good news that everything is working for you. The thought of the surgery is very daunting, I was the same. Try not to think about it too much as it's a long way off yet. I know that's easier said than done. You sound like you're doing really well. Although I'm sure it's difficult with a toddler and baby. I've been using Sainsburys Chop Chop app to get shopping as I can't get a delivery slot. It's good if you only want a few bits they deliver up to 20 items to you within an hour, a deliveroo driver brings mine. Take care xx
Thanks for checking in! Glad to hear your lump was scar tissue, that must have been such a worry for you.
My treatment hasn't changed, I'm in hospital today for an echocardiogram and my fourth round of EC before moving on to docetaxel, trastuzumab and pertuzumab. Being cooped up in a flat with a 4yo and a baby and no garden isn't much fun but fortunately I'm a natural hermit so not the end of the world 😉 The hardest thing has been getting hold of food but some lovely friends and neighbours have been helping and we now have priority delivery slots (when we can get them) plus I've been using local businesses for top ups and emergency supplies. Costing a fortune!
I'm loving my walk to hospital and back, have to say 🙂 I've been here pretty much weekly for scans, chemo, bloods etc. Otherwise I've been out a few times to take my son out for some fresh air and on his bike, just avoiding shops really. Except the M&S in the hospital as I figure I'm already here so it's not really an increased risk!
Good news is my tumour has shrunk by about half so far. They found another lesion but it's small and they're not going to biopsy it as apparently it wouldn't change their plan to do a mastectomy. I'm still very nervous/scared about surgery but it's at least another 14-16 weeks away so no point worrying.
Thanks for replying, it must be tough for you going through the chemo and having to home school, cook and all the other stuff you have to do as well to keep them occupied!
It's a really crap time isn't it. I know what you mean about meeting up with friends and family. Just to meet someone for a coffee or just go for a long walk would be an absolute privilege right now.
I'm ok thank you, I had a lump appear, near my surgery scar. I went to the breast clinic, saw a surgeon had an ultrasound and they said it was scar tissue so that was a relief. I've been taking Tamoxifen for nearly 3 months now and I have an oncology appointment tomorrow, I expected it to be cancelled and done over the phone but I received a text this morning telling me to come in, lots of instructions about coming alone etc etc. The strange thing is I'm actually looking forward to going to the cancer centre, how strange is that! It's because I haven't been out in 4 weeks. I'm going to have to walk there too, it's about an hour walk there and another hour back again obviously! I'm so happy to be getting out, it's weird!!
How is your treatment going, do you have many side effects? Have you had any shrinkage? Is there any sign of surgery on the horizon for you yet? Stay well XX
Hi shablah... thanks for checking in! Hope you are well too?? My chemo hasn’t been effected up to now and I have got 6 more weeks left (am wishing them away!) but am struggling emotionally with not being able to meet with friends and family for coffee or popping into the shops for bits. This part of lockdown (social distancing) is unbearable and feel for my kids too who are also self isolating with me for 12 weeks and have been out of our house twice in 4 weeks (on a bike ride as they where going crazy) thank god we have a garden but they are missing their nannies, grandads and cousins.
We will get back to normal soon enough , and sending everyone lots of positive vibes 🌈🌈🌈
Hi Ladies - Jem, Lily, Lvp, B4 and Lefty
Hope you are all doing ok. This is most definitely a very strange time for us all. I hope you've all been able to get your treatment as normal. Just thought I'd check in and see how you are all bearing up. Sending best wishes and positive vibes to you all 💞 xx
Hi ladies.... just checking in and hoping you are all well!! It’s such worrying times but wanted to say your not alone, and we will all get through this **bleep** storm together.
hope everyone’s treatments are going to plan, glad mine hasn’t been altered up to now but seen lots of women’s have 🤞🏼🤞🏼
Jem 🌈🌈🌈 xxx
Oh wow 15 hours, that’s a long surgery. The node full clearance definitely would have added time onto the surgery but that’s still very long! Am so sorry to hear you have had complications after surgery too! Hopefully your now passed the worst and you’ll be home soon enough! Your surgeon sounded like he knew what he was doing and was definitely the right decision to make sure the flap was attached could have been a lot worst if it didn’t take once your surgery was done! Can’t have been nice having to go back down to surgery thou, and even having the saroma. I know another lady who had this and her consultant waited a week before draining she was in agony.
Bet your itching to get home in your own bed!! Have to admit this was one of my main concerns in the debate of mastectomy vs breast conservation, my boys are still young, with my youngest being 3, I can’t even go the shops without him fretting for me. He would be lost if I was away for 2 weeks especially in the current climate when they are not letting under 16’s onto wards.
Am glad to say the decision has been taken away from me. I meet with the plastic surgeons on Wednesday and they are happy with the progress with the chemo and the Shrinkage of the tumour, and the surgery options that have been opened for me. She was lovely and actually said you wouldn’t cut your arm off if you had a sore finger and less invasive surgery options were available. So I am going down the route of breast conservative either with LICAP or therapeutic reduction. So just this decision to make within the next two weeks.
And if I don’t like the outcome of this procedure I can always be referred back to her and she will do a mastectomy with the DEIP so I know down the line this is still a option for me or god forbids i get a local reoccurrence.
Onwards and upwards for you.... will you need radiotherapy?xxx
how are you doing?
Sorry for the long reply, just received this just now. So I had my op 2 weeks ago and currently still in hosp. The DIEP has been successful (so far) took a bit longer than anticipated, I was in theatre for 15 hours but only because the surgeon was happy with his first attempt of joining the blood supply. I also had a full node clearance which would have added time.
I was doing great after surgery and by Saturday home had already been mentioned, all drains were out and I was managing to walk on my own.
Unfortunately by the Sunday I had spiked a temp and my breast was really red and hot to touch. Surgeon said it was a saroma and was just very unlucky that it had happened. I had to go back to theatre on the tuesday and have a washout and then again on Thursday for another washout. There were talks about going back to theatre again but my (new) drain has started draining really good volumes so they are hoping that’s enough. I’m on IV antibiotics but my infection markers are coming down all the time so hopefully they will be stopped soon.
So my breast is a bit swollen but overall I am more than happy with the results, I actually can’t believe how natural it looks (minus a nipple). As for my stomach, it’s really not cause any problems, I thought it would be really painful but it’s more just a tight feeling. (When I came out of surgery I had this thing they called a bomb, it was tubing that ran along where the surgery was done and it delivered local anaesthetic every hour, it really was amazing)
All in all I am glad I made the decision I did, even though I have been longer in hosp.
If you have any questions please don’t hesitate to ask, it’s best going in with as much info as possible xx
This sounds like great help. I went to the hospital today to look at photos, which helped. But I think seeing and speaking to others must be better
Hey lefteye84 just checking in to see how you are following your surgery last week. Hope all went to plan and your now recovering at home.
would love to heard your experience once your up to it I have to make the decision of mastectomy with DIEP like yourself or therapeutic mammaplasty (breast reduction) and keen to hear your experience.
Sending you lots of love for a speedy recovery! Jem xxx🌈✨
Thank you. The step of putting my thoughts on this forum is already helping. I will try to start talking to people as well. It is soo hard to believe it.. I will download that App.
Do they offer a show and tell
i went to the Royal Free and every month they have an event where previous patients come in and show the results of their different reconstructive surgeries. The ladies are marvellous and inspiring and bare all so you can really see what an implant vs DIEP flap using tummy vs TUG flap vs all sorts. With nipple tattoos and nipple reconstruction. You get to interview them all and they are so helpful. At points it’s hilarious.
It’s a great way to find out more information. Ask if it’s available for you. 😘
Great to hear everything is moving in the right direction for you with the chemo. Xx
This is a very difficult thing to get your head around. I was diagnosed at the beginning of December and still get very up and down times. It's a very surreal thing to be told you have cancer. You have been dealt a huge shock, you need help and support. Don't keep this to yourself, talk about it. I'm sure you will find most people very kind. I'm not one for meditation and stuff but I do now, since diagnosis. Download the free app 'Smiling Mind' there's lots of helpful programs on it. Also call the nurses at the top of this page. There is lots of support available for you, you just need time to digest all this bad news, the first 2 or 3 weeks after diagnosis are the worst. Indescribable at best... Things will improve for you as time goes on even though there are some tough times and decisions to be made XX
Sorry to hear about the delays you’ve suffering. The waiting game is horrendous. Since my diagnosis at the beginning of Dec I feel like I’ve been drip fed info but the reality is that some of testing took longer, some had to go for further tests and more scans and tests were deemed necessary.
It does feel frustrating and the waiting is horrible but take it one step at a time. I feel like I’ve had great care and I now feel reassured they are doing everything to reduce the risk of it returning.
take it easy and be kind to yourself.
Thank you Jemma. I have been avoiding talking to friends about it...and with family I have been feeling guilty about disruption of things. I am starting to get past that now, and can now actually say the words.
awwww Tansy It’s completely normal to feel scared and anxious, worried, upset but these are all normal emotion and I had them all for the first 10days (I think o cried for the whole 10 day’s waiting for results) after my initial appointment, when I was diagnosed I changed and I got a kick arse attitude that this cancer was not taking me away from my babies and that’s stayed with me. Now 3 months down the line I still get some of these emotions but also hope (recently been told chemo is working and my BC is shrinking and opening more surgery options 👏🏼👏🏼) and also I have felt so loved and friends and family have been amazing! Try and stay positive I know it’s hard at times but having a positive mental attitude will help you and talk talk talk to anyone about any worries or concerns. You are among a great group of ladies all at different points of treatment so someone here will be able to help you!!
I need to decide between having a mastectomy with DIEP or therapeutic mammoplasy (reduction with volume replacement) its such big desisions to make but my breast consultant is referring me to plastics teams to discuss 1st options and I have 4 weeks to decide. So take you time and don’t rush into a decision.
I am the complete opposite am the person who has read all the booklets and like to know everything (all the information going I have the book 🙈🙈) but i find it’s easier for me this way.
stay positive 🌈✨ jem x
It is all so scary. I was scared as soon as I found out but I got good advice on reconstruction.
I did have one surgeon pushing me for implants surgery. Saying I can do the op next week. I felt like I was being pushed when I wasn’t ready to make the decision. Saw a couple of other consultants and went for immediate reconstruction using tummy fat. I had to wait a bit longer but it was worth it. I know I’m lucky being able to do that but i am now nearly 5 weeks post surgery and I feel good. I can walk about 2 miles. I know it takes about 3 months to fully recover but I am feeling so much better physically. I’m not saying it’s been easy but the fear was worse than the reality. The emotional side is a bit of a roller coaster though. It is a major thing and it is so natural to feel scared angry depressed or whatever. I do feel those too. Find out as much as you can. Get as much support as you can and be kind to yourself. Take care. Sending love. 😘
Hello. I am new here only a few days after diagnosis and am pretty scared. Your post has helped. Thank you. I have to make a decision about surgery and will ask about the reconstruction option. I am scared of whether I will be able to look at myself with one breast gone.
I have the same, but my reaction has been different, I just wanted to run, run and run. Cant get my head round it either. I just want it to go away. I know it wont but I hate thinking about it.
Hi lilyb,. You poor thing. I used Igloo gel for my ulcers as well as salt water. Its available off the shelf. It may be worth seeing if you have oral thrush,. Mine was really sore and i was given fluconozole to take each cycle and it certainly didnt get so bad again. Speak to your hotline, i did and they gave me a prescription that day. Ice lollies or ice-cream may help with the mouth too, or i found fruit tea was nice. Tonic water was refreshing too.
Thanks all. I didn't have any injections, just steroids and anti nausea pills for the first few days.
I'm still feeling crappy on day 14, awful cough and sore mouth. Hoping it passes soon! Exhausted from lack of sleep as well. Got some manuka honey although it's not very strong as it's so expensive! But hopefully it'll help. Does anyone know if I can use bonjela for the ulcer? It's too painful to eat and drink now.
Looking forward to feeling better! Next chemo a week today.
Hope you're all okay x
Hi lillyb,. Ii cant cant imagine how hard this is with a newborn i have the biggest admiration for you. Youve been given great advice already but i just wanted to add that the manuka honey for a sore mouth is great and i also made a botttle of cooled boiled water with salt in and regularly swished that around my mouth. You can get a mouthwash called Difflam too, you can ask the hospital to provide some for you for next cycle. I developed mouth thrush on occasions and the hospital would give me some medication for each cycle and id start that as soon as i felt a tingle. If you're having the self administered injections too they can cause fluey type aching but should ease as soon as the injections stop. Dont hesitate to call your chemo hotline if you feel too poorly as they may be able to help you. Keep a note of how you feel each day as it may be a pattern for next time. And you can then start treatments before they take hold. I found day 5-6... Emotionally tough and the mid week worse for symptoms but things picked up again.
Rest all you can...kip
Sorry you are going through this with a new baby and a toddler it can't be easy. I don't have any advice for you as I'm not in the same situation, but just wanted to say I feel for you.
Jemma has given you some good tips. I know you don't have family close by but I was wondering if you could contact Macmillan or a local charity to help give you some support? I know some will help with housework, food shopping and things like that. You need more rest than your getting. Hope you start feeling a bit better soon xx
Awww lilyb84 , sending you a big hug! Chemo and new baby seems so unfair for anyone to cope with but you will get through it. It’s not easy but definitely bearable, I found the 1st cycle was the hardest so hang in there it does get easier so stay positive.
i always had fatigue until day 10 (once the stomach injections stopped and then I tended to feel a lot better and more normal). so try and take it extra easy in the first 10 days. Nap when you can and try not plan much for the week after chemo, washing can wait till the following week when you have more energy. I just used to make sure kids had clean school uniforms and hubby had clean work shirts everything else could wait.
Take paracetamol for headaches and aches and pains (make sure you check temp before hand to make sure you haven’t got a infection coming on). I also bought some Manuka honey 525 from Holland and Barrett for my throat (expensive but really good) and would defo recommend this for mouth/throat. I had mouth ulcers and sore throat and they were gone in a day, and also add slice of lemon in the morning to the honey when you need a little natural boost. plan little walks, as fresh air would make me feel better.
Just think we are getting the worst part over 1st and surgery and chemo will be a breeze after chemo!
Honestly my best advise is accept help! Let friends or family watch your baby for a couple of hours so you can rest and recoup and don’t worry about the house as you will get your energy back before your next round. Hopefully baby will start sleeping through within the next couple and weeks and you’ll manage to get more sleep, for me lack of sleep was the worst and I didn’t have a newborn.
Your doing amazingly, keep positive 🌈✨ xxx
How is everyone? I'm feeling less well now post-chemo - have felt very cold-y/flu-ey for most of this week, everything aches, sore throat and headache and now a cough too 🙁 Doesn't help I'm only getting 3 hours' sleep a night! I'm napping when I can.
Jemma did you continue to feel okay? I'm on day 13 now.
Lilyb84 I found EC completely bearable, day’s 4-5 where always my worst day’s and then I’d be back to normal, so you’ve defo got this.
I have said all along if you have a good positive mental attitude it really helps, and keeping active and drink lots of water 💧
sending you all lots of positive vibes.🌈👍🏼