This is so true and a brilliant analogy - passing the baton on! Love it and so true x
It’s just so heartwarming to think that I’ve given you some encouragement and reassurance. And in a few weeks time you’ll be writing your update and reaching out to someone else. It’s like we’re all in a relay race - handing on the baton (of love and support) to the next member of the team!
It is a scary time but the waiting is the worst bit.
I’m here if you need me and happy if you want to private message me about anything. The ladies before me held my hand too and now it’s my turn. xxxx
Thank-you so much Jacaranda for your update. I am having a mastectomy and DIEP reconstruction on 11th October and am frightened silly. Yours are the first words that have really re-assured me. The tips on what to take in to hospital - especially the extra long charging cable and a "day one" bag - are brilliant. I have the added complication of having diabetes and am on an insulin pump, but the team are confident that this will not cause a problem.
Wishing you a full and quick recovery 🤗
Thanks for the tag - and gentle reminder that I should be posting my update!
So here I am, out on the other side, day 10 post-op, and all is good 😊
Firstly, I must thank all you brave warriors who did this before me and provided SO MUCH comfort, support, advice, encouragement and reassurance to help me through. You were all amazing. Thank you.
Secondly, to all the newbies joining this scary journey that they never thought they have been on - you will be absolutely fine. Stay strong and be positive.
The worst bit is definitely the week or so before the surgery. Fear of the unknown. Your mind is in turmoil. Keep busy, catch up with friends and enjoy life.
Going into hospital is scary especially when you’re on your own and knowing there’s no visitors because of Covid.
Don’t pack too much - you don’t need half of it. Usual toiletries, dressing gown and slippers, phone charger with a LONG lead, and your bras and knickers as recommended (couple of each) and a button up nightshirt for when you come out of the hospital gowns. The best thing I took (and definitely my top tip!) was a large sports top drinking bottle (with an integral straw) that you can drink from lying down without any strain whatsoever, and without any spills! I also had a facial mist spray which was refreshing and cooling. I packed a little sports rucksack and made sure all my ‘essentials’ were in it before I went to theatre - all the things I thought I might want in the first day or two without having to ask the nurses to scavenge through my suitcase every time. (Water bottle, facial mist, phone and charger, headphones, lip balm, baby wipes, tissues, book, notebook and pen, specs, boiled sweets and flapjacks)
So I arrived at the hospital at 7.10 am and was in theatre by 8.30 so there was no dithering about. Everyone was very kind and calming. Plastic surgeon drew all over my boobs and stomach - looked like a child’s treasure map! (X marks the spot!)
And then gown and compression socks and off to theatre. Chat to a lovely nurse and anaesthetist while they prepare everything and then ‘whoosh’ you’re fast asleep.
Next thing they’re waking you up and they’re telling you that you’ve had your operation and you’re asking what time it is and working out how long you’ve been asleep!
There’s lots of dressings, drain in my left boob, drain in my right side, catheter, oxygen cannula in my nostrils. But it’s all ok. I could even manage to text my husband, sons and a couple of friends to say I’d done it! The nurses are checking you every 15 minutes and that’s ok too. It’s quite reassuring to be so well looked after. Drink loads of water - as much as you can (especially while you’ve got the catheter in and don’t have to worry about getting up). You’re wrapped in a heated plastic inflatable cover - it’s very hot but not unpleasant. Take all the painkillers that are offered - don’t wait till till you think you need them as that means you’re in pain. And if you need extra in between just ask. It is a painful operation and I’ll be honest, the first couple of days are tough, but work with the nurses to make sure you have good pain control. It can be done! You will need the laxatives too though (and fig rolls and dried apricots also help!)
Had my op on Thursday and was sitting out in a chair for a couple of hours on Friday afternoon. Couldn’t have even imagined that on Friday morning. Had this absolute fear that my body would rip in half at every movement - once you realise it hasn’t you can then concentrate on your breathing and you’re little shuffling movements guided by the nurses who know exactly what they’re doing. Trust them.
So Friday afternoon the heated cover goes, the oxygen goes and I’m eating shepherds pie for supper.
Saturday morning out comes the breast drain and the catheter. Going to the toilet the first time was like running the London Marathon (not that I have) - it was a challenge and a struggle but a huge sense of achievement. It got a little bit easier every time.
Sunday they said I could go home but I did decline their offer. I was geared up to go home Mon/Tue and had support in place. I didn’t want to jeopardise anything and felt I needed to be stronger, more mobile and pain to be fully under control. Stand your ground if you need to - don’t push yourself. I felt much better on Monday and was ready to go home.
You need lots of pillows and cushions for the car journey.
And then you go home, go to bed and get looked after. It’s your turn now after all those years of looking after everyone else. I’m lucky to have family - get a friend to stay a few days if you haven’t.
I came home with abdominal drain in (called her Daisy) and kept her in a cloth shoulder bag next to me. Went back to the hospital on Thursday and had dressings changed and the drain removed. Felt much better once the drain was gone. Pain relief was immediate. Have a bit of a wound infection so on antibiotics for that and I go back again next Wednesday.
But I’ve done it. Not only has the wretched cancer been removed (first priority) but looks like I have a neat firm boob and a tighter flatter tummy than I’ve ever had!
Still taking things one day at a time and enjoying being kind to myself and NOT feeling guilty. (Ignoring the gentle bickering between my husband and sons about ‘whose turn it is’, ‘whose mess it is’ and chuckling quietly that they’ll just have to get on with it!)
Be brave. Stay strong. Think positive xxx
Ahhh it went really well thank you! Found the first 48 hours after the op really tough, but now on day 11 and everything is good 👍 Difficult to bend down and walk about 0.1 miles an hour, but it feels great to have two boobs back again! Had mastoplexy on my healthy boob. And can fit into some figure hugging dresses that I haven't been able to wear for years as I looked pregnant in them! So the new flat tummy is an added bonus. Back on Thursday to have the dressings removed. Had a small infection that set in, so I'm back on antibiotics, but apart from that everything is good. For anyone out there wondering whether to go ahead with DIEP, I would definitely say a big yes!! I had my reservations, but I'm so happy I went ahead with it 🙂
Good luck, you are going to be absolutely fine. You sound mega organised and I’m glad you are taking care of yourself and being kind. Not long now and you can then start the healing process. I’m just back from a holiday in Italy - swam in the sea and it felt great. For me the pre op wait was the worst…. all completely normal.
best of luck and keep being positive.
just wanted to send you a pre-op hug. You’ve got this far, and you’re within touching distance of the rest of your life, once this pesky episode is over (and I know it’s been a long slog). Looking forward to hearing from you when you feel up to it.
My operation is looming (just 4 sleeps away now) but I’ve taken on everyone’s advice. I’m keeping busy, catching up with friends, enjoying long walks and eating healthy food. Most importantly I’m being kind to myself and just taking one day at a time.
I think I have everything ready - my hospital ‘bag’ is now a suitcase! Button up PJs, reinforced granny knickers, front fastening bras…. (It’s hard to know how many of each I should take in though and having no visitors means they can’t bring stuff in!)
I’ve got my lovely mastectomy pillow (thank you Jen’s Friends), couple of books, headphones, phone charger, dried apricots and fig rolls (!), water bottle, and all the usual ‘going away’ bits.
And I’ve just got to keep being positive and strong like you amazing brave ladies who’ve already done this 💖
I had a lovely dream last night which I’ll share with you. I dreamt that I had woken up after my operation and my lovely surgeon was smiling at me telling me it was all over. She guided my hands to feel my reconstructed boob and scars (which is a bit crazy as they would all be covered up with dressings and there would be drains in!). Everything felt so perfect and there was no pain. A very strange dream but I did feel a huge sense of relief.
Hopefully this means everything is going to be ok…. xxx
Thanks for the reply 🙂
I had exactly the same type of cancer as you ... invasive lobular which was ER/PR positive and HER negative. I had two tumours (one 35mm and one 20mm) and several cancerous cell areas. No family history. I was diagnosed after finding a lump in my left breast. I'd never had a mammogram as I wasn't at mammogram age yet. My lymph nodes were clear thankfully. They said I would probably need chemo before the mastectomy, but then decided after op when they had the pathology results that there was a big enough margin at mastectomy to not need it. I have to take Tamoxifen for 10 years (one year already done). Have they put you on this? They put me on it as soon as I was diagnosed. Living with one breast the last 16 months I have found really tough, I have to be honest. So if you are having immediate reconstruction I would definitely say that has huge benefits.
Just realised I got my date wrong .... mine is on the 7th Sept not the 9th. I'm being admitted on the 6th. I live in North Wales, but the surgery isn't available here so I'm having to travel to Liverpool.
Is there a way of private messaging on here?
Thanks for reaching out to me in these scary times. Let’s be buddies and get ourselves through this…..
You’ve already had a longer tougher journey than me due to Covid but our emotions will be very similar with 9/9 getting closer.
My leap into the world of breast cancer began in June this year after I noticed a dimple under my left breast (just like a thumbprint in a ball of plasticine)
Within a couple of weeks I’d been diagnosed with invasive lobular breast cancer (ER/PR positive and HER negative) and told I’d need mastectomy as 3 tumours in different places.
Had sentinel lymph node biopsy a few weeks ago and so relieved that the results came back clear.
Won’t know about future treatment (radiotherapy/chemo) until the pathology results after the mastectomy. And then wow, yes, huge decision making about reconstruction when I can’t even decide what flavour yoghurt to buy!
What an emotional rollercoaster! Some days just felt like ‘get the cancer out and be done with’. Plastic surgeon has been very patient and understanding and has reassured me that I’m strong enough and fit enough to go through this and that I’ll be very well looked after so I’m going to focus on those words.
I’m also looking ahead to when I can write of my experience and reassure others on here like all the brave ladies before us!
Sending you a big virtual hug from London.
We can do this!
I've just put a post up about DIEP reconstruction and then came across your post. I'm having the DIEP op the same day as you on the 9th September in Liverpool. It's delayed as I actually had the mastectomy in May last year. I was told immediate reconstruction wasn't an option due to COVID. I'm REALLY nervous about such a big op. Maybe you want to keep in touch to give each other support both post and pre op? Hayley.
@sarahn - I’m so glad! You’ll hopefully start hurtling through the milestones now (stopping compression stockings; dressings off; scar massage; sleeping on your side, etc) and it’ll all be in the rear view mirror soon enough.
Hi all, thanks for all your messages of support. I am 3 weeks post op, it couldn’t have gone better. I feel absolutely fine and am planning a trip to Italy at the end of the month. I echo the advice listed below- drink loads of water too - it really helps. I also would recommend dried apricots- very good. Be mindful of liquorice allsorts as they can raise your blood pressure in some cases. I just wanted to say thanks, and offer support- I was so nervous pre op but actually post op was so much better than I had anticipated. Modern medicine and surgery is unbelievable and I feel incredibly fortunate.🥰
Thanks for the amazing support and advice. I’m looking forward to being at the other end of this now and chuckling out loud that I might even change my name to Bertie Bassett! I will add yoga pants, fig rolls and liquorice all sorts to my shopping list! xx
@sarahn , just wanted to echo what @vanmack @said - the staff are all brilliant, and know that we’re going through a range of emotions, so don’t worry about putting yourself entirely in their hands. I just wanted to get on with it so I could put it all behind me and move on, and it’ll be behind you soon enough too xx
I was given very good advice about trying to avoid constipation (this is nothing if not glamorous). Although the hospital gave me liquid laxatives until I didn’t need them any more (ahem), I also stocked up on fig rolls and liquorice allsorts. I also bought bras from Sainsbury’s, and the other advice I was given was not to go overboard with them, you don’t need too many. I wore yoga pants most of the time (bought specially, I am not a yogi) which were very gentle on the waist and didn’t touch the scar, and zip up tops, and generally lounged about. I also bought nice candles, and hand cream (Neom do mini hand cream tubes and they smell amazing), just for a bit of pampering. As other people have said, the staff are brilliant and do everything they can to relax you - all you have to do is listen to your body, and know that this too will pass.
You’ll be on here dispensing liquorice allsorts-type advice before you know it - we’re all rooting for you x
Hi @Fiveoclocksomewhere so pleased to hear another positive post re Diep Flap. I agree with you completely on doing things that keep your mind busy and stop it from wandering to negativaty avenue, for me the psychological impact had been as important to focus on as the physical, coming to terms with the loss of a breast and the surgery does make you think exactly that 'What the hell just happened to me '! I had to make a choice for surgery that I did not want but had to have, be that implant, remain flat, Diep flap etc, it's an emotional roller-coaster but we're out the other side 💪 we'll done on getting to the gym, I'm trying to stop eating my body weight in cake, it's hard 🙄 all the best with your recovery x
Thank you all for your positive encouragement. Much appreciated - and such a boost just when it’s needed!
I realise my expectations for recovery after my lymph node surgery last week were just way too high and I was really hard on myself. So hopefully that’s a big lesson learned before the ‘big op’ in September.
I just have to slow down and be kind to myself! (Easier said than done!)
Hoping and praying that I’ll be back here offering words of reassurance to others in a couple of months time.
I’ve had moments when I’ve just thought ‘get rid of the cancer and forget about bothering with reconstruction’ as it sometimes feels overwhelming - but I guess that’s normal??
There’s so much to take in and process and I guess it’s only 6 weeks since my whole world was turned upside down.
Spent yesterday evening ordering button up nightshirts, post-surgery bras and shapewear granny knickers! Was surprised to see that Asda had a good range of stuff that was cheap and cheerful but had good reviews.
Any other tips and advice would be very welcome!
Hi @sarahn, sorry for the late reply. I don't know if you have had your surgery yet but wanted to wish you all the best. The surgeons will do their absolute best for you and you will be so well supported by the staff, they know this is a big surgery and scary for the patient so adjust their care accordingly. This is just another experience life has thrown at us one we will look back on and say isn't it amazing what they can do 😘
Hi @Jacaranda, sorry for the late reply, I am so grateful for the immediate reconstruction, I really didn't want to go through multiple surgeries as I have pre existing health conditions. I continue to work on my recovery and am content with the outcome aesthetically. I have been offered nipple reconstruction and dog ear correction (the pointy bits at the ends of the abdominal scar) but they are not important to me, I don't really notice them. At this point I'm not bothered about a nipple, and feel I've been through enough for the time being. That said this is a long haul flight, I have learnt the hard way what my limitations are physically and now listen to my body perhaps for the first time ever. If I can offer any advice it's look after your new body with plenty of rest, lots of lovely foods, gentle movement often until you feel more capable and know that you will get through it ❤️
I’m hoping @vanmack‘s experiences continue to be positive, but wanted to drop you a line to hopefully allay your worries. I’m now over 3 months post mastectomy and immediate DIEP, and can honestly say that the most challenging bit for me was the week or so before the surgery, when I was trying not to let my imagination run away with me. My recovery’s continued to be straightforward - I went back to the gym a couple of weeks ago, and although I’m taking it easy (any excuse….), that felt like a big milestone. The scars are really neat, and I’m massaging regularly- and looking forward to the nipple reconstruction, hopefully later this year. I made a huge effort to eat healthily in the run up to the surgery (spinach in everything…), and I hope that’s helped me heal well - I haven’t gone mad about it though, and it obviously hasn’t stopped me eating copious amounts of ice cream when the sun’s bothered to shine too.
My overwhelming feelings are still of huge relief that the DCIS was caught early, and was treatable; of disbelief that this happened at all; and of awe at the surgeons’ skill.
I hope your experience is equally positive. If I were to offer any advice at all, it'd be to try and keep your mind busy (I was surprised how useful I found the Headspace app), get as much fresh air (and sunshine, ha!) as you can, eat as healthily as you can bear, be kind to yourself and don’t listen to anyone who brings you any negativity. This will pass.
Much love to you. If you have any questions at all, or just need a virtual hug, just say the word.
I’m re-reading your positive message now that my surgery is getting closer. I’d even ‘forgotten’ that I’d asked the question about breast reduction and surprised myself that was 1st July - a whole 6 weeks ago on this rollercoaster journey!
I’m having mastectomy and DIEP reconstruction on 9th September. And yes, the surgeon was very understanding and supportive about my request for reduction.
I had sentinel lymph node excision and biopsy last Wednesday as they wanted that done separately and before the main op in case it changes my treatment plan.
I was very bruised and sore after the op and it took longer to get over than I expected although I may have been too hard on myself. It took 5 nights to realise that sleeping with a pillow under my shoulder meant I woke up without severe pain and stiffness in my arm!
Wish I’d found out sooner.
I hope my experience in September will be as positive as yours. I’ve got 4 weeks to get my act together physically, emotionally and practically.
Good luck everyone
Thank you for sharing this, I will have surgery soon and I’m petrified but your message has given me a real boost. Thanks so much
Hi there, I’m having the same procedure- I asked my consultant if I could have a reduction and the answer was yes - it’s not a cheeky request. Seriously, you’ll be surprised at their response.
So heartwarming to hear of your positive experiences here. Hadn’t appreciated that immediate reconstruction wasn’t being done in the peak of Covid. Sorry for those who have to undergo a second op. Something else I should be grateful for in the scheme of things.
I’ll be having mastectomy and reconstruction in the next few weeks but I’m feeling really cheeky as I want to find out if the reconstruction can be smaller and my ‘normal’ breast reduced to match. Is that too much to ask for? Feel guilty thinking like this when my priority is obviously to get rid of my breast cancer. Just wondered if it might be an option though.
Thankyou @Fiveoclocksomewhere so glad to hear it's been a positive experience for you. The hard bits done, I wish you all the best in your continued recovery ❤️
My experience (I’m now 4 weeks post-op) is very similar to yours - all very straightforward, and I’m delighted with the new breast and how neat the scar is, although my overwhelming feeling is of relief that the DCIS has been removed. What a way to end lockdown!
much love to you.
You are very welcome Becky87, I know for me I would have been anxious whatever surgery I was having, yes it was a long surgery it can be done in less time but my surgeon was meticulous, no other reason for the length he just wanted the absolute best result for me. I knew nothing about it, it was more concerning for my loved ones to be honest. Initially post surgery is difficult as you have drains in both abdomen and breast but mine were removed after the 3rd day and you start to feel more comfortable, you will be well supported with appropriate pain medication and our fantastic NHS staff, i wish you all the best in your choices x
Thank you for sharing this! I had a mastectomy for dcis in April last year and wasn’t able to have recon at the time due to covid. Currently on the waiting list for a Diep but been feeling anxious about it. Wondering if it’s worth going through such a long surgery. Like you I didn’t want an implant as didn’t want anything foreign in me!
glad to hear it’s gone well, you have restored my faith In My decision. Thank you 😊
How nice to read such a positive response to your surgery, wishing you well with lots of very happy days ahead.
Please take good care, look after yourself one day at a time.
Big hugs brave lady 🌈🙏 x
Hi everyone, I am on day 10 post op for a right sided mastectomy, sentinal node biopsy and immediate Diep Flap reconstruction. I thought it might be helpful to share my reasons for choosing this type of surgery and my experience after surgery. I had WLE previously in the same breast in 2016 for high grade DCIS plus 15 rounds of radiotherapy, er/pr negative. On my last (5th) year surveillance mammogram a new cluster of calcifications were detected in the same site plus a new area of invasive ductal carcinoma. My only option at this point was a masectomy, I knew I did not want an implant or anything foreign in my body so for me it was either try the Diep or stay flat, I'm a young 52 year old not ready to accept that just yet. My surgery was just over 11 hrs, it went really well and medically they were really pleased with the surgery and my observations. I cannot tell you how scared I was to have such a long surgery but that's understandable, there would be something wrong if I wasnt. Emotionally I found it hard to accept the surgery and it took a long time for the anaesthetic to leave my body, honestly only started to feel the brain fog leave in the last couple of days. But, I am amazed how I have turned a corner, beyond chuffed with my new breast which started to have sensation around three days post op and now feels like part of me, because it is part of me! My mobility is getting better each day as I continue to heal and am doing my exercises as recommended. I currently only require ibuprofen and paracetamol but only when I feel I need it. I am in awe of the surgeons skill, I have a brand new belly button and a flat but still numb stomach with a surprisingly considerate scar about 1.5 inches above my pubic line running in the curve of my groin area from hip bone to hip bone. Most importantly they have cut the cancer out of my body and that's the priority, reconstruction was a choice but I'm so glad I was brave enough to go for it. Love and hugs to anyone out there who is going through this terrible disease xx