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Unicorngirlmumm
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since
11-01-2018
215
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78
Hugs
05-03-2023
09:32
1 Hug
I’m sorry that you’re going through this again. I used the cold cap the second time as I couldn’t face losing my hair again. It’s not a pleasant experience, although nothing about breast cancer is. I’d say I kept about 70% of my hair. It will shed, you have to be careful with your hair but I would lightly straighten mine as it had the crazy chemo curl look!! It will shed but I was so pleased that I persevered with the cold cap. Good luck xx
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07-09-2022
10:47
2 Hugs
Hi Lisa, I’m sorry that you have been diagnosed again. I hope that your team have a plan in place for you. Lots of love xx
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02-03-2021
10:11
1 Hug
4 weeks of waiting is torture 🙁 I have everything crossed for good news. I hate having scans. They reduced my CT scans to 6 monthly, I had the latest one on Friday. It doesn’t get any easier. It always helps when you know the plan. This limbo stage is such a roller coaster. Big hugs 😘 xx
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01-03-2021
10:18
1 Hug
Hi, I’m glad that my gruesome story has given you some hope. It’s just so deflating to know it’s back. I hope that you have a plan? It’s all the tests/scans & the dreaded waiting whilst letting your mind get carried away. That’s why I shared my story, I remember desperately searching for a positive story after a recurrence. I hope that you don’t have to wait too long to find out what happens next. Xx
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07-09-2020
09:23
19 Hugs
Morning lovely ladies x I was debating with myself whether to post this or not. I hope it doesn’t come across as insensitive as I know everyone in the group is at different stages etc. I remember when I was first diagnosed that I always wanted to read a positive story so this is why I thought I’d share mine. It’s quite a long post...... First diagnosed with metaplastic TNBC in September 2016 age 41 after finding a lump. I had a lumpectomy, Chemo & radiotherapy that finished in April 2017. Around the June/July time my breast was red hot & very, very achey. They put it down to treatment & I was referred to physio. I developed 2 tiny holes that got bigger & bigger until I was left with a huge 4cm deep leaking cavity in my breast. I must have rung the BCN weekly! I had the breast consultant nurses number too who I would also call as I knew something wasn’t right. They thought it was necrosis from radiotherapy or an old infected seroma. I had ultrasound scans, an mri that didn’t show anything. They debrided it in theatre & applied a vac dressing. Thankfully the surgeon took a biopsy as it was infact a recurrence. Another 4.5cm TN tumour. I then had a mastectomy followed by more chemo. This finished in January 2018 & in April there it was again! It showed itself as a dark raspberry coloured splodge. The surgeon removed it the following week. 4 weeks later & again, another splodge. My hospital told me they couldn’t do anything else so I was referred to a different breast surgeon & a plastic surgeon who did a diep reconstruction in August 2018 as there was not enough skin to close due to the amount of surgeries I’d had. I had 3 monthly regular surveillance CT scans. In my November scan last November, several lung nodules were visible which they assumed were lung metastasis. I was referred to ST Barts for immunotherapy but I was told to watch & wait as disease needs to be measurable & the nodules were too tiny. 9 months later of sheer torture & my CT scan a few weeks ago was clear! The nodules had gone. I was told that because I was young & has a relentless cancer, they assumed it was cancer in my lungs. This makes me 2 years clear 🎉🎉🎉 Long story short....3 recurrences, 5 surgeries, 2 lots of chemo & radiotherapy & there can be a positive outcome. I know I’m still far from the finishing line & I’m still neurotic about every single ache/twinge/cough. I desperately used to look for a positive story with each recurrence so I wanted to share mine. Lots of love 💕💕💕 xxxx
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29-11-2019
09:14
1 Hug
Hi, hope your appointment went well today? I also had metaplastic TNBC. Yes, it’s very rare & there isn’t very much information about it. The information there is available is very scary. It won’t let me message you. Maybe if you send me a message I can tell you about my experience. Xx
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15-01-2019
05:44
Hello, I had AC chemo at the end of 2016 and lost all of my hair. I had a recurrence in 2017 which meant further chemo, I couldn’t bare the thought of losing my hair again so I used the cold cap, I had docetaxol and carboplatin almost 11 months after finishing the AC chemo. I kept most of my hair using the cold cap, I probably lost about 30% of the hair. A year later looking at the regrowth I honestly don’t think the hair grows any quicker than if you don’t cold cap. Possibly because I had a recurrence going on my hair grew slower, but the thick chunks of new hair I have don’t look any longer than when I was when I didn’t use the cold cap. I still lost eyelashes and eyebrows. Xx
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15-01-2019
12:10
Hello, they’ll give you a prescription for a Limbo. Have you had your form for free prescriptions yet? The chemist had to order mine in so maybe talk to your surgery about getting it prescribed now. Xx
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07-01-2019
05:34
Hi Lynne, I’m sorry that you’ve had a recurrence. I had a recurrence very soon after my first lot of surgery/treatment finished & my oncologist told me they were still trying to cure me. Good luck with your new treatment plan xx
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08-11-2018
07:04
Hi Chrissy, I’m also TN & like Kateday said, you’re not advised to take any supplements whilst having chemo. And yes, the steroids do make you crave things like crisps or white toast!! I totally get what you mean about the chemo being more scary than the cancer. Once you start it does become more bearable & it’s good to tick them off as they’re done. Like kateday says, join the monthly chemo thread, it’s very comforting & reassuring to have other lovely ladies going through the same issues as you & to share helpful tips etc. It’s not nice but it’s doable. Try & drink plenty as it does help. Good luck xx
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08-11-2018
06:55
I hope you managed to get hold of someone today xx
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04-11-2018
04:46
1 Hug
Hi, I had all of my treatment at Eastbourne which is the sister hospital. That seems a very long time to have to wait. When I was told my biopsy results I was given a surgery date there & then. I do know someone with DCIS who waited a long time & that was at the conquest. Very frustrating when your head must be all over the place 😬 I hope that you hear something after Thursdays MDT. Maybe contact your BCN Thursday lunchtime? Good luck with it all xx
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12-10-2018
03:57
1 Hug
Big hug Marla 😘 The stage in between diagnosis & surgery is almost surreal. I remember being manic, cleaning windows & washing the cushion covers! Helped to keep me busy. Honestly, the bra extenders are great! If you want to pm be about anything I’m happy to answer any niggly questions xx
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12-10-2018
10:37
It’s totally understandable. All the best, you’ll be sitting up with tea & toast before you know it. Get that unwanted rubbish in the incinerator where it belongs!! Big hugs xx
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11-10-2018
11:40
It’s the thread under this one, Marla is the lady in the same position as you xx
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11-10-2018
11:39
Hello Quaggie, I’m 7 weeks post DIEP & reduction. Like everything, you just don’t know how your body will react. I’ve been very lucky post op with no complications other than a reaction to the surgical tape. My hospital was a 50 minute journey from home, the car ride was ok but you’d need a pillow. The hospital like you to go back there, usually a week from discharge to the dressing clinic. It’s little things like getting the stockings on & off for a shower which is difficult. There’s a lady on the going through treatment - surgery part who also lives alone & is due to have a DIEP. The reconstruction breast nurse said I could take a picture & email it to her if I was worried about anything. I know from talking to others that not every hospital has a reconstruction nurse though. I had to inject myself with a blood thinner for 7 days, would you be ok with that? I don’t think you’d need someone with you all the time but you definitely need someone to check on you daily. Your body will really let you know if you do too much & you don’t want the risk of complications. Sorry, I know you don’t want to hear that 😔 I hate the thought of you being alone after such a major operation. You also can’t stand straight for about a week. They use surgical tape which you can shower with so that’s not a problem. After 9 days I was going stir crazy & pottered around Tesco with my husband! I was exhausted for doing so. I hope I’ve not upset you xx
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11-10-2018
10:58
1 Hug
I can’t see them online. They definitely have them in the shop as I bought another pair only a few weeks ago. They’re all elastic where as the M&S shape wear has a control panel which I think would be too tight on your tummy. It is very scary, but we’re all brave fighters & I find going into robotic mode helps! Get rid of the unwanted tumour in order to move forward. The waiting is the worst bit. Xx
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11-10-2018
10:05
1 Hug
The bra extenders come in a 2 hook or 3 hook, you can put 2 of them on which they did with my bra in the hospital. They’re not even £2 on eBay. I’d also recommend an extra long phone charger! Again on eBay. Are you on Facebook? I’m on a mastectomy/reconstruction private group which is very helpful. I’ll try & post the pants link but I’m a technophobe!! 😂 They weren’t in with the normal knickers, they need a hanger they’re so big & heavy! 😂 I had a lumpectomy, chemo & radiotherapy first, then a recurrence so a mastectomy & more chemo, then another recurrence so an excision, then when it came back again I had the DIEP. The PS said he could have just resurfaced it but that the scars would be awful. I’m triple negative & it’s also metaplastic which is quite rare. They say I’m very unusual! It’s never spread anywhere else 🤞🙏🏻. I always thought a mastectomy completely lowered the chance of breast cancer but I now know this isn’t the case!! I’ll have a go of the link, don’t hold your breath though!!! Xx
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11-10-2018
08:57
1 Hug
Morning ladies, I too was advised to get the primark pants, they’re £5 & look like a swimming costume they’re that big!! I have to say that know I’m past the 6 weeks & can wear normal underwear, I find them more comfy as they make me feel supported. I think someone else said that too. Yep, the hospital appointments certainly do take over your life. If you try & change one I always find the person on the end of the phone SO unhelpful, like you don’t have any other commitments!! I like that exercise too Wendy, when you roll your knees whilst lying down. it helped with my back as I found that was very achey post op. I was advised to get bra extenders Marla, they’re very cheap on eBay & have been very useful as I find towards the end of the day if feels tighter. I’d like to return to the cross trainer, I hope it will help the mental scars. I had to have the diep as I was on my third recurrence & there was no room to cut it away. 2 years of surgeries, chemo, radiotherapy, surgery, chemo. My tumours always returned 6 weeks after surgery or chemo so I’m at the paranoid stage now. I find some days I feel like no, it will not stop me, & others I feel like it’s so overwhelming. Have a good day everyone xx
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10-10-2018
02:14
Hi Christine, you’re a week ahead of me. Sleeping is an issue. I tried without the V pillow last night but that wasn’t comfortable. I think the V pillow is making my neck ache. Sorry you’re having such problems Wendy. Fingers crossed that it can now heal. That must be such a relief to have all of that fluid drained. Thank goodness it didn’t hurt, it doesn’t sound nice 😳 xx
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