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Stephie82
Member
since
4 weeks ago
26
Posts
14
Hugs
Thursday
Hi Katrina Thanks so much for your reply! Im so pleased it all went so well foe you.. And so quick too! I feel calmer for hearing its not as bad as my mind imagines and only needing paracetamol is amazing. It sounds like you're doing really well and i hope you continue to recover well 🙂 xx
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Thursday
Hi Annie Thank yoy for your message, that's really good to hear.. I really hope I feel better after the op. I really hate all the build up. That's amazing you feel less anxious this time. Im so sorry to hear its back again though.. Or is it a different type? That's so unfair. May I ask if you were on tamoxifen as I understand that's supposed to keep it away. Recurance or secondary cancer is really worrying me at the mo. As you say though I shouldn't look too far ahead.. I know that doesn't help me! Have you gor your op date yet? Steph x
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Wednesday
Hi Katrina Im not sure my previous message sent.. The messaging on here seems hit and miss but just wanted to say i hope today has gone okay for you. Big hugs Steph x
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Tuesday
Hi Maire, Thanks for your message. The drains are partly what I'm dreading, I'm so squeamish so I'm not looking forward to all that sloshing around! And what a nightmare that yours all leaked, thanks for the heads up. I'll not panic if it happens but I'm dreading it all really. It sounds like overall you're recovering well though? It's great that you managed a brisk walk. How are you doing today? My op is getting closer and closer (Friday) and I tell myself it's all fine and I'm calm but I also feel very anxious. The nurse said its all routine to the surgeons and that its rare for anything to go wrong in surgery so why am I so petrified. I've never had a general anaesthetic or an op before. My boobs are quite large so I'm going to be incredibly lopsided 😞 but at least the cancer will be gone I guess. How did you get your head around it all or did you not over think it and just get on with it? No idea how I'll cope when I see I have no boob, just a scar Steph x
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Monday
Hi Marie Thank you for your reply and all the info. Sorry I took so long to reply. How are you doing now? That's amazing you didn't even take any pain killers at all? Didn't the pain killlers and anaesthetic wear off leaving you in pain? It's so reassuring - I guess the surgeon neatly stitches it up and it just heals. Sorry to hear about the seroma, I hope that heals up. Did you have an auzilla clearance as well as masectamy? Ha ha about the cooking! I hope you've still not said anything?? Hope you're doing well with your recovery Steph xx
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Monday
Hi Katrina, That's great that they barely found that any of it was invasive..that's really positive. Mine is called invasive lobular BC although they said not to read into the word invasive. It has spread to at least one of my lymphs so they're removing all of them. Apparently that's quite common and it's still treatable so that's great. Nope I've not got any history of breast cancer in my family so it was out of the blue. I looked into it and being overweight and alcohol can increase risks (I'm a size 16 and always trying to lose weight!) I drank way too much in my 20's and even in my 30's we probably drink over the 14 recommended units, well did, I don't now and I've lost half a stone doing lots of walking! I think you're right about the masectamy not being such a big op without the reconstruction being done at the same time. I think it's a pretty standard op for the consultants although obviously it's a big deal for us. I'm also nervous about chemo but trying not to think of it until they say after the op what I need. I feel the same as you, I just want it to be removed and got rid of with the masectamy. Are you all packed and ready for tomorrow? Are you staying in one night? Steph x
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a week ago
Hi Evie Thanks for your reply, that's really helpful and positive. I'm glad you've been able to enjoy your tennis again. I really hope that's just during recovery that the warm water could cause swelling.. hopefully that's not a life long thing?! I've emailed the lymphodemia society so I'll see if they reply. Hopefully a BC nurse will reply on here too. I can cope with things being off limits for the short term but long term/ permanent is really hard to accept. I guess I just need to be grateful for being alive though
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a week ago
1 Hug
Hello, I'm sorry if this seems like a really trivial post but it directly relates to my emotional well being which is in tatters at the moment. I've got a right sided masectamy and full auxilla clearance on 3rd July and I will then find out 2 weeks later if I need chemo (they said 95% chance I will) followed by radiotherapy and they said it'll be 6 months treatment total... it all sounds like hell but I'm trying to be positive. One thing that was keeping me going was saying its 'just' 6 months of my life and by Xmas I'll be back to normal (if I'm lucky enough to be cured which I have to believe I am) (stage 2 lobular breast cancer which has spread to lymphs). My issue is that since lockdown like everyone else I've not been able to go to my gym which has a pool, hot tub, sauna and steam room. I used to LIVE for my day off from work for some work and child free me time. I've been telling myself in 6 months I'll be back there but some people on a facebook group I'm on say you can't do these things after masectamy/ lymph clearance? Is that correct? obviously you need to heal for several weeks etc and obviously not during radiotherapy but once all healed and better can I do these things ever again? Also, if they tell me after masectamy that I do need chemo then I was going to treat myself to hiring a hot tub for my garden!! I've been through so much and thought sod it! I've heard that hot baths etc help during chemo when your bones are painfully aching? If its a private hot tub with no one else in it and the water is clean and chlorinated is it ok to use during chemo? How long after masectamy and lymph clearance can I use the hot tub? I know it depends on each person but I'm hoping once all healed, after a month or so I can use the hot tub? Sorry if this seems petty but its the ONLY thing I have to look forward to in my life. I cant go out anywhere! cant get my hair cut, my nails done etc to cheer me up as I'm isolating pre op. I cant go on days out, holiday or see friends and family and I was sooo looking forward to this but now I'm worried I can't even do this?? Thank you so much for reading! Steph x
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2 weeks ago
Hi Becci Sorry to hear everything you're going through.. it's so tough isn't it. I know exactly how it feels to wait for results, that was the worst time for me.. I was in shock with the diagnosis and literally petrified with the scans but it does get much easier after you have your results and a treatment plan in place. Now I have my plan in place I feel a much less stressed. I've got my masectamy on the 3rd and then probably chemo and radiotherapy. 6 months in total of treatment which seems a long time doesn't it but I found out on 13th May and that was well over a month ago so time will go quickly. Once you have all your results back and a plan in place you will feel better. Just remember these days the science and treatment is amazing and we will get through this. We can all support each other 🙂 Lots of people have said to me dont think about the whole big picture just literally take it each day as it's much more manageable. As for the cold cap I assumed it was an option but I've not asked my hospital. However I've decided not to bother with it as I dont want to be in hospital longer than I need to and also I've not had a hair cut since Feb(!) so it's not looking it's best in any event ha ha! I think with hair loss it can make people look ill but I've told myself the hair loss is simply the chemo which is making me better. If you see what I mean - its not the cancer making us lose our hair. I think you're absolutely right there are some gorgeous head scarves etc out there so between that, wigs and summer hats we will be fine 🙂 Apparently hair grows back thicker and more healthy looking after chemo! No idea why that is but this time next year we'll have gorgeous hair! I understand how you feel about being alone in all this. Friends and family can be supportive but they can't really understand how we feel so it's lovely that we can chat to each other. We'll come out the other side together 🙂 Steph xx
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2 weeks ago
Hiya, my pre-op telephone apt was mostly asking me my whole medical history and they also booked me in to go for a heart ECG and a blood test (to check blood group). I went the following day for those tests. They also suggested a few things to bring to the hospital. They said to bring slippers and a book and to leave all jewellery etc at home. They also gave me a number to ring for a covid test which will be 48 hours before my apt. They said no alcohol 48 hours before op. I think that was it! They used to do the pre-op all together at the hospital but with covid they try to reduce how much time you're in hospital so the medical questionnaire is done over the phone now. I really hope your op date is sooner than 6 months - why did they say 6 months? x
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2 weeks ago
2 Hugs
Hi Flamingo It's so nice to hear from you. I'm so sorry to hear you've got to go through all this and for a second time. I often feel really positive and that I can get through all this but I really worry I'll get through it and it comes back.. it's so unfair. I don't understand how it all works and why it comes back but it really worries me. I really hope this is the last time for you, now they've taken out all the lymph nodes hopefully it can't come back again? I'm having all mine removed too as well as a full masectamy so I hope it doesn't come back. Did you recover okay from having all your lymphs out? I know what you mean about talking to people going through a similar thing. It's great you have lots of support and my partner and friends are great too but it's just not the same. Also, you're so young too. It would be lovely to stay in touch and support each other 🙂 As for hair loss and chemo that's so true about it being summer. I guess in winter it's a little easier with having hats on etc. I had looked into head scarfs and some are really pretty and hopefully very light material so I think that's what I'll go for. There's some lovely ones online. Are you going to try using a cold cap to keep your hair or are you trying it? I don't think I'm going to although I know some people do and it works for them. Steph x
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2 weeks ago
2 Hugs
Hello Bernard very kindly suggested I contact you. I've got lobular breast cancer and am having a masectamy on 3rd July and full lymph clearance on one side as it's spread to the lymphs (auxil clearance I think it's called). I've been reassured by some lovely people that the masectamy often isn't as painful as you think. I'm assuming I'll be given pain killers to take home from the hospital. I'm such a wimp and very squeamish so I'm dreading the op and the drains etc but I'm telling myself it wont be as bad or painful as I imagine. However I've also just read up on lymphodemia (I really wish I hadn't). This is now really worrying me. I think my consultant said people are at a 50 % chance of developing it - is that right? I'm worried about this and how painful that will be and is it permanent? I feel quite anxious about it all but I'm trying not to overthink. Should I be worried? And how can I reduce the risks of complications? I'm 2.5 stone over weight so I probably need to lose weight but haven't got long! I do go for a walk for an hour each day and I'm only 38 and fairly good (average) health /fitness otherwise so I hope I don't get complications. Thank you. Steph x
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2 weeks ago
1 Hug
Hi Bernard Thank you so much for your reply. I've got a pre op telephone call apt tomorrow with the hospital so I'll ask any questions then but I'm sure I'll have more in the days leading up to the surgery so it's nice to know I can contact the nurses on here. Thank you, and I really appreciate having this site and you lovely people - it makes me feel less alone and scared! Thanks again x
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2 weeks ago
Hi DJD Thank you so so much for your reply. I can't tell you how much better and reassured I feel. It's such a relief to know the masectamy isn't total agony for weeks! Did you also have you lymphs removed? I think you're right, the build up is always worse. I also often feel much more together between apts but then being at apts makes me emotional (especially the scans and wearing the hospital gowns etc makes me feel psychologically like I'm really ill!). Once I'm back home I feel better again after a while. I'm so relieved to hear the drains are at most an inconvenience. I'll try to not let my mind run away before my surgery - It'll be nice to be back home and feeling better each day, like you say. You've been so positive, thank you 🙂 And I hope you've made a full recovery. It's so lovely that people like yourself stay on these forums and help others going through what you've been through 🙂 Steph x
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3 weeks ago
1 Hug
Hi, I've got my masectamy on 3rd july and would love to chat with anyone going through the same. Im being positive but of course its a scary time. Im 38 and lobular breast cancer. After the masectamy I may have chemo and then radiotherapy. Looking for positive vibes 🙂 xx
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3 weeks ago
3 Hugs
Thanks Mai for setting up July's chemo board. I'm Steph (38) and was diagnosed on 13th May with lobular BC. I'm having a masectamy and lymph removals in 2 weeks time and then chemo in July followed by radiotherapy. Hoping to find support here and to support others who are starting chemo in July! I'm trying to be really positive as breast cancer is usually treatable these days but it's an anxious and stressful time (got a house move on the go as well!) so it would be great chat to others in the same boat 🙂 xx
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3 weeks ago
1 Hug
Thanks Mai, I've just looked at Drydrinker.com and wow! It looks amazing. I'm absolutely going to order myself some and cut out alcohol. I see it as a relaxing thing after a stressful day but I'll make some new healthier habits I think (not that I drank excessively but you know what I mean). Thanks so much as well for the link to the new page and setting it up! I'll go over and put a post on! Thanks again x
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3 weeks ago
Thank you for those helpful tips. Its lovely you've come out the other side and helping others! I couldn't see the chemo group for July, it's probably too early. I'll keep an eye out. 🙂 It's scary having a weakened immune system during covid particularly but i guess they give you drugs to strengthen it. Wish I could just fast fwd 6 months but im sure everyone wishes that. Im really trying to get fit abd healthy. Im 2.5 stone over weight and drink a bit too much wine i think lol. Im going to try and get really healthy 🙂 i was worried about long term effects of cancer and treatment but it seems like many people can lead fit and healthy lives after.
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3 weeks ago
Hi Jan, thank you for your reply.. That's great you're 5 years out the other side! That's a good point about the nhs! I must keep reminding myself its treatable and i'll be cured.. Hard not to worry what if.. I worry they'll make a mistake in the op! Or I'll get the arm swelling thing.. Must not think like that tho!
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