Oh Bloss, you do make me smile 🙂 That's one image that won't leave me in a hurry......! Here's to a a smooth flight, unlimited pain relief and big knickers! Loadsa love, Tat xxx
Hi BottyBoo - Think your oncologist will order em or your breast surgeon, everyone seems to get different, ASK ASK ASK, he who makes the most fuss (Im not suggesting you make a fuss, BUT >>>>> You have twins, one cries and screams all the time, one sits there and is good as gold, ? who gets the most attention. So ASK ASK ASK
Love Bloss XXX
Hi Tat, haven spoken for couple of lightyears, how you? Is the gel helping? Yeh Im actually O.K., not really normal is it?, Im off buying sodding easter eggs tomorrow a birthdaz prezzie for my daughter who will need it after Im out but not about and taking my eldest daughter to the hospital for a womans problem check up, inbetween washing everything in sight and doing a months shop!!! Posting instructions on the washing machine what no is for what clothes and generally getting ready to check out of being a domestic godess (imagination req) for couple of weeks, will post tomorrow then probably not for couple of days!!! Checking into gate at 6.30am for departure at 8am on Saturday long flight, should be landing at between 9 - 11pm conditions permitting. Got two baggage checks at two poxy hospitals 70 miles apart, first at 9am tumor marking then 3pm lymph node an radioactive injection, if Im seen saturday running down the runway with my arse hanging out of my gown screaming get away from me, just ignore it. As of yet no turbulance no butterflies Im packed overwieght (whats new) but being 50 miles from hospital to hotel my lovely husband, useles git, if I asked for undies, well cant see me squeezing into my 22 yr olds size 8 thongs!!! so got me bridget jones with me
Hope your alright
Hi Bloss. Been catching up on your posts and I'm so sorry you've had such a cr@ppy time with the nurse at your pre-op. Yes, they have to explain the risks, but it sounds like she positively enjoyed it! Some people are clearly not in the right job 😞 Glad your GP and Bibi have been able to reassure you a little to balance out the wicked Nurse Ratchett's performance. There's lots of people rooting for you, Bloss, and I get the feeling that if anyone can bounce back from that kind of surgery, you can. Lots of love and hugs coming your way, lovely ♥
Thank you for the reassurence, I was fine, well you know not fine but accepting, of the proceedure I was about to have, think some of the medical profession think we are ejits and have no idea whats involved with anything, ha they should sign up here, we would be the best most considerate treatment planners on this planet, they are obviously ignorant of what goes on on this site, and we know more about treatments and symptoms than they will ever know, anyway it was as someone said "Nurse Rachett" who completly knocked me off balance and I spent the weekend locked in my own hell, isnt it stupid how things said in the wrong way, the same as things said in the right way can tip you over the edge, well over the edge I went, I rang my doctor this morning, I haven't seen her, I explained through tears that I was facing this op and had been knocked flat by the pre op nurse, my lady doctor quielty asked me what she had said, the % of a blood clot in my case, being YOUNG!!!!!!!! 58, and fit and otherwiswe healthy, I am, is 1%, she said they would not consider such a long surgery if they thought it was highly likely, and would do it in two proceedures to minimise my risk, so the fact that they were prepared to do it ment it was a low risk, still a risk, but everything has a risk, yeh don't we all know that on here, but a low risk, anyway, she went quiet the doctor for a moment, then she said "Ive had that", I thought I heard wrong, I said pardon, she said I've had that, Ive had a double mastectomy and immediate reconstruction, she said its a toughie but she said within two weeks she was fine, I know I'm not gonna be doing race for life in 2 weeks, but the fact that she said that lifted a ton weight off me, now your lovely engouraging message, phew, then the plastic surgeons PA nurse rings me up, she has spoken to the Plastic surgeon told her what I've been told and he is hopping, she sees all the post recons afterwards and had never had one with a serious chest infection or a pullomary embolisium (blood clot in the lung, spell check req!!), So now Ive clawed back up the cliff face and Im standing on Terra Firma again, I think your right Bibi the stress and worry is the worst, at least my heart must be ok, although its had a few galloping moments. So Im off work now, the ride starts friday with the lymph node mylarky nucular science whatnot, then saturday well once Im out it will be ok for me, at least I will have 12-15 hours of not worrying about breast cancer. Im SOOOO pleased the R1 & R2 gel helped I found it by accident, glad I was able to give sommat back to you lovley peeps.
Lots of Love Bloss XXX
Hi, I'm the cold cap worrier! Thank you for the advice I'm definitely feeling more positive about giving it a go at least, and I will definitely take the tips on board! Oncology appt 4th March so will discuss with them then, love Sarah xx
Just read your post below & wanted to tell you that my friend had the double DIEP. All sounded super stressful/worrying in the pre-op meeting, but she is BRCA +ve & felt it to be her only option to see kids grow up. She was in ITU after surgery for 24-36 hours, but she is absolutely FINE now. No blood clots/chest infections. She's 51. I'm not saying it's a walk in the park straight after, but like the rest of this cr*p if you have no choice you CAN do it. She's also very pleased to have a matching pair now, 6 months on.
I was talking to my cancer counsellor about suddenly panicking about rads the day before I started. I hadn't really focused on it through 2x surgery & 5 months of chemo & it hit me that they would be using actual radiation on MY body. My counsellor said it took courage to go, despite just wanting to run away. When I protested that I am not at all brave & my default reaction is to run away, she insisted that I am. So ladies we are not scared women who have drawn the short straw in life, we are courageous fighters apparently!
Bloss thanks for the R1R2 tip for rads, no problem so far& the worst bit is wobbling around the place for weeks (no bra).
To the lady who is worried about the cold cap. I used it for 2 1/2 hours x 15 chemo (I was on weekly Paclitaxels) & honestly I did not find it that bad. I even got used to the 10 min brain freeze. I did still lose quite a lot of hair, but the other 3 ladies with whom I shared the machines, week in week out, looked perfectly fine after. They said they had lost a lot, but you couldn't tell. Even I am grateful for what I kept & my regrowth started immeduately, whereas if you don't use the cap it can take 3+ months for normal hair to get going. Worth considering? Top tips: 2 co-codamol an hour before it goes on & a hot drink during brain freeze (apparently your head can't decide if it's actually hot or cold). All the best to you all xx
Hi BottyBoo, I don't have a job that involves children, but I have a constant customer facing job, I work as a personel banker and see the world and their uncle from the rich to the unwashed, I to was worried that any infection would curtail my surgery as being such a big operation they wouldnt do it if I had a whiff of anything.If you want my opinion and I've somehow worked through this, as you say it keeps it normal, whats bloody normal!!!! You have to think of YOU, and not the impact it will have on your lovely job. yes I know its dropping people in it, BUT they will cope, this is now about YOU, you have to give yourself the best chance regardless of the impact that it may have at work. If you do decide to continue, virus and infection gets in through the eyes, yes seriously, its the open wound to our bodies and has no filter system unlike ears nose and throats. So use hand gel all the time and never touch your eyes or face without using it, the doctor told my husband that, he travels on the train and tube every day, getting numerous colds, throat and other infections, and Im talking monthly. Since using the hand gel as soon as he gets to work and off tubes and trains he has had one cold in a year!!!!!
Love Bloss XXX
Tina, that sounds about like my plan of action - although I'm about 4 weeks behind you. (Hey when you put 4/6 chemo completed - sounds so good!!) I'm probably going to have to have my inplant moved back into place or replaced, so I'm hoping that can be done in August (after our holiday in Greece 😄 ) I was thinking I could go back on a phased return when I had radiotherapy, which I'm thinking will be in June. Would love to think I could start September treatment and appointment free!!
Hi guys...... Just letting you know what I was advised.....
I had first op early October, second 12th Nov. Managed to get back for few days before end term and first chemo in 18th Dec. Strongly advised not to go to work during chemo, even though on good week before next cycle as very high risk of infection. Was gutted, I miss it soooooo much!!! I'm a Support For Learning Education Aux in a secondary school. Though some work in schools and avoid kids I was told told not to. Even staff go to work coughing spluttering etc. Touch wood, so far I've avoided any infections and wouldn't want to risk any delays in my treatment! Know what it's like, parents sending kids in even if they're not well!?
I've just had cycle 4/6 chemo, first T Friday past. I asked onc nurse if after last cycle and before rads start month later if ok to go back for week or so phased? She pulled a face said probably best not to, lesten infection risk and I'll probably be too fatigued..... Yeah right..... We'll see!?! That's my aim, to get cycle 6 done early April, hopefully return phased back last wk April first May then three weeks off for radiotherapy. Hopefully back phased in again (work what able during weeks) by first week June then we break up for summer hols 30th June!? 👍🏼 with returning in August. That's my plan.... 🙏🏼
Plus I may get my reduction op fitted in during summer hols and recover to go back!?
Got to have an aim eh?! Xxx Tina
Hi Bottyboo 🙂 I'm a teaching assistant in a junior school and worked up to the week before my operation but havent worked since (Dec 7) because I was advised not to now I'm having chemotherapy. I have dropped into school since, but just the staffroom, so I avoid the children and their many germs!! I was a bit panicky (so were the rest of the staff!) when the children were sick, came in with hacking coughs etc etc - but much to my relief I was fine!!
Good luck! xxx
Hi BottyBoo Lovely lovely lady, THANK YOU for putting it into perspective for me. I don't have a breast care nurse, because my treatment is all over the place, my breast surgeon who I do believe I have a breast care nurse attatched to, but she has been sick for 5 weeks, I don't have a number for her, I just get a call from the surgeon, then the plastic surgeon I do have a nurse contact for him as well as his P.A., I have been to three different hospitals, one to see both plastic surgoen, breast surgeon (seen her 4 times I think), oh and the nutty doctor assessment, 1 in london for CT scan, (that was posh) and now the Royal Free Yesterday, so I don't have continuity (christ wish I could spell, apologies) of care. Your gonna larf, I havent been to see my GP!!!! Seriously, Ive spoken to him on the phone once and arranged to get the prescibed hormone drug put on repeat, the breast surgeon has written to him for my records and his I suppose, dunno if the plastic surgeon has, I only know the Breast Consultant has cos she sends me a copy of what she has sent him. Must admit I have pondered about going to see him this week to get sommat to stop me jumping in front of a train, but probably wont get an appointment until Friday. !!!! Fridays gonna be a nitemare too, Ive gotto go to the Hospital (Luton and Dunstable ) that has the breast care department, (40 miles away from us) because my breast surgeon wants me to be marked where the tumor is, and she only wants her team to do it, then travel to the royal free and in the afternoon have the nucular radiation injection and the ultrasound mapping for lymph nodes, she has agreed to that at Royal Free cos to have it done with the marking means it will be in too early, So Im 9am at one hospital 40 miles away from us, and 3pm at another 80 miles from that, oh and throw the injections ultrasounds and mapping into the pot, together with Im having 14 hrs plus surgery the following day, god knows what state I'm gonna be in, maybe I will have to go to doctor, I will be fecking glad when they put me out and the circus will stop whilst they disect me.. You couldn't write it. Anyway you've helped and I thank you from the bottom of my heart.
Love Bloss XXX
P.S. Im drinking the whole bottle tonight, sadly ive become immune to it XXXXX
I know what you mean, I'm scheduled for double mastectomy and DIEP reconstruction one week today, I went to the hospital on Thursday fairly confident about the proceedure even thou I knew how long and serious the operation is, mines double which means two plastic surgeons working on me, one each side. Well I saw the breast care nurse there, and to be fair wished I hadn't, Im in her words, Very high risk blood clots in the lung and leg, very high risk chest infection due to length of time under for the operation, well according to her the list is effing endless of very bad, not one not fecking once did she say its a successful proceedure, I left thinking, "thanks for that", I wonder why they bother to do the operation then. So like you Im scared witless at what is a terrifying thing to have in the first place, since I saw her on thursday I've not been to bed nor eaten. BUT deep breath, the someone like me service on here that I spoke to in December, put me in touch with 2 lovely ladies that have both had mastecomy, (sadly for me only one breast) both with immeadiate reconstruction, one by way of implant, one by way of DIEP, both are recovered cancer free and 3 years further on. Sadly for me the BC nurse at the hospital has undone all the reassurance and confidence talking to them had given me, but why don't you ring the advice line here and ask for the someone like me service, you will then be put in touch with actual ladies that have done this and they can ressure you, sadly my level of anxiety has trebbled since meeting the breast CARE (thats a joke, hope she aint on my ward) nurse, and to be honest Im just thinking of walking away an getting on with my life unitl I can't, I completly understand where your coming from, Ive been unable to talk of find anyone who has had both done, but with just one reconstruction you are left with a good side to get you through until you recover. Its a shame when giving us all the infomation that CAN go wrong, they don't tempure it to the fact that we are already scared out of our minds, I'm sure my BC nurse enjoyed telling me, shame really you would think she would have recieved training as to how we at that point would be feeling, she had no empathy, I wasnt expecting a hug!!!, She has made me feel like the cancer is a better option to stick with. Ring the helpline, it may help you decide. I wish you all the luck in the world with your decision
Love Bloss XXX
Bottyboo..... I had the same. Lateral mammoplasty, lymph node clearence, now on chemo, followed by radiotherapy........ Xxx good luck with your op! You'll be fine Hun! Oh and I'm 49! Xxx Tina
Hi Bloss, sounds like you definitely earned that brandy! Fancy getting the wires back to front, the thought of the surgery is so scary isn't it. I've been backwards and forwards to the hospital as a big swelling appeared under armpit, but doctor checked it and said its ok, only a blood clot, tissue and bruising and my body should absorb it. I looked lovely walking around with my little bag of blood and drains, Just resting again today, bloody breast cancer. We will all get through it, one day at a time, love Jane xx
Hi Sarah, I'm so glad you felt much better once drain was removed. I hate it. As you say you can't do anything for yourself which is so annoying. I did have a cry this morning out of sheer frustration, I have my appointment for next Tuesday to have the drain removed, so not long to go love Jane xx
Hi Tina, I'm starting chemo in April, don't want to lose my hair but heard horror stories of cold cap. Can you tell me what it's like? I've heard claustrophobic, causes blinding headaches, means the chemo takes 5 hours and you still lose some hair? Love Sarah xx
Hi, I was only diagnosed last month, have had 2 surgeries and last set of results yesterday showing only 2/24 lymph nodes with micro traces, so I'm clear now. Onto chemo and radio. I was convinced it had spread, if I couldn't think of a word it was in my brain, if my leg ached it was in my bones, I have spent the last month in a complete state of terror, and no matter how much the nurses told me that wasn't the case I was unconvinced. We are all behind you 100% as we've all felt the same way, not much help I know, but you are not alone, love Sarah xx
Hi Jane, I was same, stain was stabbing me, couldn't get comfy, felt so down as couldn't even get dressed independently and it feels like it's never going to end. I had my drain out this Monday, my right arm still sore and tingly but I'm so much better, more or less back to normal, keep your chin up, cry when needed and ask for stronger painkillers. I got tramadol and made it so much more bearable. Took them every 6 hours, including the middle of the night but it stopped the pain getting on top of me. Nothing else was touching it, they really worked. Love Sarah xx
Hi Julia, I didn't have travel insurance arranged before this nightmare, I don't know if you do, but I spoke to insure and go today, £10 million medical expenses including any breast cancer linked issues for £60! The policy total for me, hubby and daughter £170! I was pleasantly surprised, so if you need insurance give them a call! I think we've earned a good holiday xx
Hi Andeezegirl........ So sorry you've found yourself on here. Please be assured that what you are thinking is exactly what most, probably all, have thought, especially at the begining of this crap we find ourselves in! What you're feeling, thinking and how you're reacting, is, for now the 'norm'! It's hard to think you will ever be able to trust your body again as we've been let down by it so badly with this awful cruel disease!
Where are you at on your diagnosis? What have you been told so far? Do you have a treatment plan yet? Sorry to ask so many questions but there is lots of threads and info to access here.
Do You have plenty of support at home with you? There are other threads you can go to that will help too. Have a look on....... Just Diagnosed and wanting to talk..... This too is helpful. Also there's the support helpline to chat to someone, you can private message me or anyone else here if you feel you're not ready to talk to everyone?
Please DON'T Google anything!!!! If you want to find out anything, meanings of diagnosis etc, read your booklets or folder from clinic, use this site or Macmillan. Ring the helpline or your BCN. 👍🏼
Take a breath, you'll find once you've got a plan in place you'll feel a bit more in control. Sounds crazy now I know, but I felt soooooo petrified in the begining (still scared now) but found once things were getting done, surgery etc a bit of relief came to know they were getting this **bleep**e out of me.
I'm 49 and I was diagnosed in August, lobular grade 2 and in lymph nodes. I've had surgery, twice, recovered quickly and well from both. Now, today I'm going for my 4th out of 6 chemo cycles. Hate it, not one for needles and I'm cold capping which is not comfortable ( but touch wood is working so far!). But I'm coping by taking each step at a time, asking lots of questions (only ask what you feel you can cope with), using thus forum has been a godsend! My focus is, hopefully 7 weeks from now chemo finished!! Then I've radiotherapy and medication for 5-10 years.
Were all all here for you Hun, 😚 Please stay in touch, we will all get through this!!
Xxxx Hugs xxx Tina
I ll still be coming blossom. I want to meet those people who have supported me these last few months . Hope all goes well for your op, keep in touch xx
Hi Jane, hope your feeling better, my pre op was a bit intense, had usual test etc, ECG, they got wires back to front so my results on ECG were a bit worrying until they realised. Err as for the rest of it, well a brandy is called for tonight. I will have a hickman line stitched into my neck for 3 - 4 days, cathether, may have blood transfusions, op will be about 14 hrs, the record she said is 20!!!, Im high risk of blood clot in my lung, oh and high risk of chest infection due to the time I'm gonna be out, will have drains in my stomach each side of boobs (2 in each) got a critical window of failure of 72 hrs, well and thats the good stuff, she did say the 50% of women bail and go for lesser surgery when they realise whats involved,, then when I've survived all that, well I may have chemo to look forward to, but she said their stats of failure where only 3% !!! Tally HO, fecking nora, Feeling quite numb with it all, and I just wanna turn back the clock, but then don't we all.? One day at a time Jane
Love Bloss XXX
Hi Julia, fab news for you, hope you still come meet us in November, youv'e earned your place. Bet you sleep tonight, home free for you, So glad. Have a fantastic holiday.
Hi Bloss, feeling battered and bruised today and drain so uncomfortable. Had to go back to hospital this evening to get swelling that appeared under my arm checked. All seems to be ok but they want me to ring breast care nurses in the morning with an update. Felt so much better yesterday but not so good today. Hope your pre op went well xx
Thank you all. Relieved is not the word.
This forum has what has kept me going when at times I didn't think I could.
Sarah we are in Florida same time. We re flying out on 26th March. I haven t got anything yet as didn't think I did be going. Best I get my but in gear xxx