Thank you Michelle. I know i posted my rant on the chemo thread but it probably should have gone on here. I have never been one to cry and through most of this i have been the "good strong woman" i am expected to be but at times everything crowds in, you have no support and you are scared. Cancer is scarey no matter how strong we are. I am glad you got your support when you asked for it. My husband has had to deal with a lot and is a great support but we have always been quite independant so it is all new. I had to email my plastics consultants PA for an appointment and she has provided me with the number for a specialist nurse in another hospital that she says will talk to me if the Marsden still don't call me tomorrow. I have made an official complaint through the Marsden website so no one else is left stranded with a phone system that means you can't talk to who you need to and a pre arranged plan that can't be carried through.
Just getting to know the rest of you on here as I read through your stories and wish you all the best. The chemo threads have been my lifeline so far and the support has been amazing. As i move forward i know i will have support here.
Hi everyone. I am from the April 2018 chemo thread and this week had a DIEP flap bilateral reconstruction including a delayed on the left (17yrs ago) and immediate on the right.
I didn't notice the surgery threads on here before and have had a read through some of the operations you have all had. We all have very differerent concerns. Like Michelle i have come home with one of the 4 drains still in place. I was so desperate to come home after 5 days in hospital even though the majoority if the nurses and doctors were lovely. Strangely one seemed to avoid me like the plague and kept saying she would do something later and never did. I went from no checks on me for 12 hours on her shift back to the 4 hour checks when the next shift nurse arrived. Anyway the one drain i have should have eassd off by now and i had arranged to have the drain taken out today if the levels continued down but the drop was only slight so i phoned in the figures and will find out what happens next later. I would love to be free from the tubes. The drain is coming out at the top of my hip so really uncomfortable to wear the support pants.
The other thing of course is the pain relief. After the 10 hour op i was on a morphine pump but after it made me sick, itchy and very out of it, i reduced doses so much they took it away. I was allowed oral morphine if i wanted but have survived on ibuprofen and paracetomol quite well. It is painful to move around too much as it hurts across the tummy but i am doing what i can and am getting better each day. Movements are slow and adjusting to it. Luckily my arms seem fine but i am aware that i am not supposed to lift more than a kilo.
Anyway "someone from the team" is due to phone me and let me know what next. I have a check up on friday but really want it out before then.
Going in for my surgery tomorrow so hopefully I will be able to join in with the post surgery chat after then. Just going up to bed as I have to be there at 7.30am and I haven't packed my bag yet! Hope to speak soon x
Thanks for the good wishes ladies. I'm awake again way too early but I did sleep for almost 6 hours in the same position on my back. Less distressed than I was 24 hours ago,yesterday morning was a bad one. Catheter was removed and later in the morning went to the loo and whilst sat on it came over all hot then cold. Held onto the support bar and bawled my eyes out. Nurse rescued me and a bit later found my temperature was 37.8 so after re-inserting the manila put me in IV antibiotics. Later in the day temp was normal again but am on oral antibiotics. They think some slight infection or that I might have a reaction to gabapentin. Will see how it goes today.
Boyfriend has been an absolute star, very caring and loving even when he holds my drains when I'm on the loo. 17 years together and until now have only peed in his presence when very drunk! Now I have no shame!!!!!!
Right time for relaxing, can't sleep any more as 4am wakeup seems to be my new normal. Looking forward to tidying my appearance a little today for when my friends come to visit later.
Sorry I haven't been able to reply to each one of you about your progresses but sometimes technology defeats me and I can't remember some details or scroll well enough but as always I wish all you free from pain and angst and to remember we are strong women who will get through whatever we need to get through.
Hugs to you all.
Right from the beginning the surgeon told me 6 hours for mx and recon. Not sure if size of boobs matter (I'm a 40C) or the amount of fat/muscle on the back. I also had an SNB in June, same as you that 3 nodes were removed and all clear fortunately.
Hope everyone’s well this morning!
Michelle - glad your surgery is done and you’re home already. I’ve taken to wearing a bra day and night as I find that the gravity of my boob pulls on the wounds otherwise. I wear a soft front fastening bra designed for post surgery (from Nicola Jane) during the day and I wear a firmer cup bra from M&S during the night as I feel happier that it gives me a bit more protection if I roll onto it by accident. I didn’t have drains though so can’t advise on what might be comfortable with those I’m afraid. But the leaflets from BCC do suggest wearing a bra all the time if you can, although whatever keeps you comfortable.
Mavis - great news on the no chemo! That must be such a relief to hear. It must be great to know what the next few months/years look like, at least you can get your head around it now. My surgeon has kept saying I’ll probably only need radiotherapy and when I heard the two lymph nodes they removed were clear I assumed I’d not be needing chemo but apparently it can depend on other factors so I’m still waiting to hear one way or the other. It’s the thing hanging over me that scares me the most. I’m hoping they might tell me when I have my next appt on Weds, even though I know that I already need to have more surgery.
Jane304 - hope you’re still doing ok, with the painkillers keeping you on top of the discomfort. How lucky to be in a private hospital! The NHS is wonderful but sometimes the nurses just don’t have time to give you the personal attention that you get in private places. I hope you continue to improve - do you know when you’ll be heading home?
Michelle - hope you get sorted with the district nurses. I don’t think my GP even offers that service!
Linda17 - good news for you on the SNB front too. Everyone’s cases are so different aren’t they? It’s fascinating to read so many different stories. Glad you are avoiding any need for further treatment, that must be such a relief to hear.
Anyway, I’m 2 weeks post op and feeling ok. Had my first full day out yesterday, heading into Central London for some culture with a friend. It was fun but I found 8 hours on the go really tiring so am taking it easy today.
I feel a bit of limbo at the moment. 2 weeks post-op, but still 2 weeks to wait for my next surgery to hopefully get clear margins. The waiting around makes me anxious as no-one’s said yet whether I’ll still have to wait another 2 weeks after that surgery to get the final answer on chemo or not. And I’ll also have to wait to see if they clear margins are there or not. I’m not a patient patient so all the waiting around is the worst.
Right, wishing you all strength and speedy recoveries - keep us posted!! xxx
I'm so pleased your sugery went well. It's OK, you haven't scared me, I am expecting pain and discomfort but I was a bit surprised to hear that it lasted 6.5 hours - I have been told 4 to 5 hours but I wonder if that's because I have very small boobs (34B) so they obviously don't need to take as much from my back. I got the results from my SNB yesterday, they took 3 nodes and they were all clear so I'm really pleased that I won't have to have any treatment after my surgery. I forgot to ask you before if your SNB results were OK. Hope they were. I think I will take my tablet with me as you have so I can keep up with the forum.
Hope you start to feel better each day. Keep us informed of your progress.
Sorry for brevity or typos or missing anyone. On my tablet not my pc and not used to the virtual keyboard.
Here I am in my hospital bed after mx and LD flap reconstruction on Thursday. The operation was as expected about 6.5 hours. I went down at 2pm for anaesthetic and was back in my room at 11.30 pm. No issues in recovery room and I remembernothing of it. My boyfriend was waiting for me when I came back to my room, he didn't leave until 1am and was back by 9am bless him.
My surgeon came to see me on Friday morning and very pleased with the outcome. He did a biopsy on my nipple as aiming to keep that and seemed ok but further checks will be done on it and I should find out later today if fully ok or needs some surgery.
Friday was not too bad. I ate well and drinking lots. I have 3 drains - 2 in my back and one at the front, plus an anaesthetic in my back attached to bottle so 4 things in a bag when I have to get out of bed e.g. For having the sheets changed. I also have a catheter who h is good that I don't have to think about peeing but it's a bit uncomfortable in the urethra and I will be so happy when its removed in a few hours as proved I can walk yesterday and even managed to walk around my bed unaided.
Obviously very uncomfortable but being dosed up nicely by the lovely nurses. I cannot fault their care and compassion and patience. When this is all over I will be getting them a present, not the usual flowers and chocolates but maybe a basket of fruit or candles and pampering products.
Loving being in a private hospital in my own room For the peace and quiet.
Anyway all going well so far apart from being awake at this hour but I woke up in pain from lying in the same position and needed pain killers as the bruising on my back is troublesome.
Another good point, I've got floating boots! Really they are cuffs around my calves that are connected to something that inflates and then deflates and helps blood flow or something. They feel amusing to wear!
Apologies if unforgettable names, not easy for me to multi tab in my browser but
Michelle, glad it went well and you can deal with the bra and drains, just take it easy
Mavit, great news and so pleased that you don't need chemo and that was a lot of nodes removed. You can get through the next steps I'm sure.
Linda, you're having the same as what I've just had, you can read above some of the after effects. I'm not trying to scare you but the pains d discomfort are annoying, as is the very restricted movement as can't use the arm on the operated side but do ask for painkillers if you feel you want them even though the nurses will give them on their schedule. Right now I'm in discomfort and a bit of pain in my back but just had some painkillers which will kick in quick. Above all, be brave, we have to do this to get rid of the invading lurkers. I wish you all the best for a successful op and all that comes after. Keep in touch and hugs.
Well this was a longer post than I intended. Pain killers kicking in no doubt!
Again sorry if I forgot to mention something, I blame technology and the fact I'm hungry. Where's my breakfast??!!
All the best to you ladies and hugs.
Evening ladies - Just wanted to update
I am pleased to say that I received results from ANC and saw the Breast Registrar. She confirmed that they removed 11 nodes and they were all clear . They have taken out 13 in total of which 2 were taken out during SNB which one was infected and the other clear
She also confirmed that as a result of this , I would not need chemo as it would be on no benefit to me
She confirmed that the oncologist would write to me within the next 3-4 weeks with an appointment so that we can go through the arrangements/ treatment for radiotheraphy to the breast.
The radiotheraphy itself wont start until I am fully healed underarm which is 8-10 weeks post surgery so we are looking at end of September/ beginning October time.
She has prescribed me a months supply of tamoxifen which I have to take for 5 years and then Aromatase inhibitor for the next 5 years.
Once radiotheraphy completed , follow up appointment with oncologist and a 6 monthly review with the BCN. Annual mammograms for the next 5 years
I am very pleased that I dont need to go down the chemo route and relieved ! so this is one less thing to worry about
Seems my guardian angel was looking down on me xx
Hi Wombat Woo
I haven't had my surgery yet - I'm having a mx and LD flap reconstruction on Monday - but I did have a sentinel node biopsy 2 weeks ago and my underarm is still painful. In fact, it's more painful now than it was straight after the op. I've seen 2 BCN's in the last 2 weeks and they both said it looked fine and it's normal for it to still be sore. I think I'm just a bit inpatient and expect it to improve each day. I'm also worried that it will be 10 times worse after my surgery next week. It sounds like yours is a bit worse as you've got some swelling. Hope you get it sorted.
Best wishes - Linda x
Wambat Woo, have you been given an appointment for a wound clinic or to see your Breast Care Nurse? You might feel reassured if someone suitable can have a look at the wound and swelling. I was informed it is quite common to have accumulations of fluid after lymph node removal, but such swellings need monitoring carefully.
Also, I was advised to wear a bra night and day for a couple of weeks, to give that bit of support. I removed the wires first. I did the exercises recommended morning and night, and was careful not to over-exercise the arm on the surgery side.
The swelling should go down of its own accord after a time, but if it keeps increasing in size or becomes in any way painful, hot or uncomfortable you need to get professional advice promptly. If I were you I'd get it checked out and obtain advice from your BCN.
Thinking of you Michelle and Jane this morning as you go into your surgeries - sending you loads of strength and positive vibes. You sound like you have great surgical teams who will look after you well (and good support networks for the home care afterwards).
Also sending good wishes to Mavit for your ANC results today. Waiting, be it for surgery or test results, is certainly the worst part. Hope you get the news that you want. Fingers crossed.
My plans for a walk and the cinema today were rather scuppered by the atrocious weather - I don’t drive and I can’t face getting soggy while waiting for a bus, so I’m having a home day instead. Will do some tidying up and paper work then get on with some knitting and box set viewing. Will get some walking in tomorrow instead.
I put in a call to my BCN last night but they usually take a day or more to reply so I will wait to see if one of them calls back. I just asked if the appt next week will give me all the pathology results and who I will see. As I think I’ve said before, I don’t particularly like my surgeon - he’s not very empathetic and is a bit blunt and brutal with his talk, not really giving me space to take info in before he’s asking ‘any questions?’ and ushering me out of the room. I’m hoping that the oncology team are a little more gentle.
Anyway, wishing everyone well for today whether it’s a surgery day or results day xxx
Good luck Jane394 - I hope surgery goes well for you . It note its a a long operation - your surgeon / anaesthetist /BCN have all been through this before with other patients so remain positive and optimistic -I wish you a speedy recovery 🙂
Quaggie - keep going and stay positive . Let us know how you get on
Paulus - I am so lazy - I really need to start moving / walking too . At the moment I still feel lightheaded and havent got the strength as Im still recovering once all proposed treatments are completed, I will make more of an effort.
Michelle21 - good luck for today ! I will be thinking of you . I am sure you will be fine - please let us know how you got on and how your feeling when you are able to do so
All the best and hugs to you all xxxxxx
Good morning ladies, today's the day. Slept ok, admission isn't till 11.30 so I'm allowed to eat and drink up till 7.30am so getting in a quick coffee then will move onto water which I can drink up to 11.30. Expecting to go down to theatre around 2pm and the op will take 5-6 hours, I'm the only patient for my surgeon today - he's cleared his surgery diary for me due to the length of op (but keeping his morning clinic hence the late admission). Expected I will stay in 4-5 days but if I recover quickly and the drains clear quickly I could come out earlier. Will see how it goes.
Slowly feeling more terrified, was so yesterday afrernoon and starting that way this morning. Expect to be a puddle of emotions by 11.30 but will have my OH with me for support and TLC. My surgeon and anaesthetist are also really nice, my BCN will also pop in to see me and will watch the op, and all the nurses are lovely and so caring - I'm very lucky in my care.
Quaggie - as long as you're taking it easy and following advice from the hospital to not overdo things, you'll be fine, to some extent physically not having someone with you 24/7 might help you to not "take advantage" and be too lazy and waited on hand and foot cos that's so easy, but rather keep up with your exercises and get your mobility going, but I'm sure it all can be hard emotionally. Big hugs to you. And fingers crossed for the next step and keep in touch with your BCN etc to get info. Enjoy your cinema day tomorrow.
Paulus - walking is something I really mujst start doing, it's been on my list of things to start for years but there's always been some excuse to not. I don't have a dog I can walk (and anyway not necessary) but no reason why I can't walk places and bop along to my iPod! That will have to be become part of my new normal!
Mavit- good luck and hugs for your ANC results today, I do hope it's good news for you
Michelle - big hugs and all the best for today, I guess the op shouldn't take too long as you should be out tomorrow, but still a lot to deal with. I'll be thinking of you as I can and wishing that it goes quickly and you escape to your home tomorrow morning. For sure will compare notes.
Thanks and lots of hugs to all of you for good wishes. Will update with my progress when I can but may not be till early/mid next week depending on my recovery - crossing my own fingers!
Quaggie, have you been assigned a Breast Care Nurse? Most breast cancer patients are. It might be worth contacting her and perhaps arranging a face-to-face chat.
My understanding is that the treatment plan is put together after surgery has been completed and after the lab results are back. Once the tumour and lymph nodes removed have been analysed, there should be a Multi Disciplinary Team meeting, involving your surgeon, BCN and oncologist, to dicuss your pathology results and the treatments to be recommended. After the MDT meeting, you should be given an appointment with the surgeon and with your BCN present, at which the surgeon will tell you the results and discuss them with you. A letter is then sent by the surgeon to your GP, outlining the pathology results and the recommendations of the MDT.
I was advivsed to have chemo, but it was stressed that as my tumour was 8/8 oestrogen +ve, HER2 -ve, and as there was only one (sentinel) node involved (all 26 were removed in an axillary node clearance), that the relative benefits of chemo were uncertain. I was advised that radiotherapy, hormone therapy and bisphosphonate therapy were all 'mandatory'.
After receiving the results from the surgeon and BCN, I was referred on to the consultant medical oncologist and chemo was advised, together with hormone therapy and bisphosphonate therapy. In advance I had read up the info on chemo on the reputable websites (Breast Cancer Care, Cancer Research UK, Macmillan). Bearing in mind my medical history and the fact I live alone, have no partner or relative who can stay and look after me, I explained I couldn't cope with chemo especially as the benefits could well be outweighed by the side effects. I am 69 and quality of life is my priority.
The oncologist was sympathetic to my views. I asked him whether there could be long term effects from chemo. He paused a few seconds, then acknowledged that there can be; it can prompt leukaemia, heart problems, long-term damage to your immune system, and your hair might not grow back. He didn't suggest these effects are common, but neither did he claim they are especailly unusual. He acknowledged that in turning chemo down, I was making an informed decision and one which he felt was the right one for me, under the circumstances.
In advance of my session with the oncologist, I had provided the BCN with a resume of significant aspects of my medical history and notes of my circumstances. The oncologist had read these notes so took my history into account.
If you put together some notes of your own to discuss with the surgeon and the oncologist, with your concerns about any health issues you might aready have, as well as your doubts about chemo, it might help you to feel more in control of your own situation. It can take away the stress of face-to-face discussion, give you something to refer to with relevant dates if needed, and help you to make your decision. The experts are there to advise us, but it is the patient's decision in the end as to what they accept.
Best of luck and do ask the experts to talk you through the details of the treatments advised.
Jane/Michelle - hope you're doing ok in the lead up to your surgeries tomorrow (it is tmrw yes?). The night before is the worst as it's so hard to sleep and, if you've got an early sign in, then it's miserable not even being able to have a cuppa first thing, but hopefully the day will speed away and you'll be waking up on the other side of the surgery.
Are you both in for day surgery or are you expecting to stay in overnight?
I wish I had your PAs/partners at my place. My brother and a good female friend did the first few days of looking after but after that it's been fending for myself. Although that's probably for the best as it's meant I've got back to doing normal things fairly fast and I've been using my arm a lot. Hopefully that means I'm fighting fit just in time for the second op at the end of the month and recovery from that won't be as traumatic.
I'm still reeling from the news of needing the 2nd op if I'm honest - especially as surgeon confirmed that just because the lymph nodes aren't involved, that hasn't ruled out chemo (as I mistakenly thought it would). So I've still got to wait another week to find out about that and, tbh, it's the thing that's making me the most anxious.
I keep reading about people having 'treatment plans' but I don't know what that means - can anyone advise? I've only seen my surgeon so far, not an oncologist so maybe the plan will happen when I see them? But I don't know when that will be. No-one really talks you through the process do they?
Right, sorry, feeling a bit down this pm but am trying to keep myself busy - going out every day for a 2 or 3 mile walk and putting fun things in the diary (cinema tmrw and meeting with a friend on Fri). Must keep the brain active and stop it going on a cancer wander.
Wishing you all well - Jane/Michelle - please do post on here to let us know how you are after your ops and when you feel up to it.
Thanks Ladies, starting to get a bit panicky but I'll manage. I'm pretty sure I will have the same anaesthetist as for my SNB who is lovely and very funny - last time she wrote on my notes that I need a vodka and coke, not a gin and tonic, when I come out of recovery. And one thing I remember just before going under, was someone checking with me that vodka and coke is indeed my tipple!
Michelle21 - let's compare notes after our ops even though we're having different ops! There's still time for more purchases - I bought a bed table today - a small one with folding legs that can sit over my legs when I'm reclining on my bed giving orders to my personal nurse (my OH!)
All the best to Michelle21 and Jane304.
I hope you both have as lovely a surgical team as I had, and as skilful an anaesthetist. If my surgical experience is anything to go by, there is nothing to worry about. Techniques really have improved as have anaesthetics and analgesics. Most medics treating cancer patients seem to be extra kind.
Hoping to see you both back in here again soon.
Catching up at last, been busy busy. My admission should be done in 48 hours I will have been admitted and (hopefully) relaxing during the final wait before going down to theatre around 2pm. Eeeek! 🙂
Today's blood test went better than I expected, the nurses recognised me, called me their dodgy patient and remembering last week's experience and me pointing out the ("Hungarian") vein on the back of my hand, took the blood with no effort although it did hurt but I remembered to breathe. I think it helped having followed some advice to be hydrrated beforehand so had drunk quite a fair amount of water this morning.
Michelle21 I think you may have outdone my experiecne with your blood spurting! Hope you're all ready for Thursday - I pretty much am, just the bare essentials to put into a bag. As for the antibacterial wash and nasal ointment it seems to vary by NHS trust or private hospital - I'm going private so maybe this is an extra thing do at my hospital, or they know they will get extra money from my insurance company for the more they prescribe!
Belmont Rosie hope your recovery is still going well and that you haven't exhausted your books and Netflix!
mavit1 and Quaggie glad things are improving for you both, keep it up!
And I can also add that since my SNB on 21st June, my left armpit is not sweaty but feels constantly sticky where the inside of my arm touches my chest
Appletree oh that sounds like quite an experience you had - hugs to you
If I've missed anyone reading through the posts, I'm so sorry, it wasn't intentional and lots of good wishes and hugs to you all and look forward to your updates.