Hi Michelle, oh crikey hadn’t realised the steroids go up with T part of chemo. That’s something to look foward to, I only have 3 to get through though so will have to focus on that bit. Did your hair start to grow back during the T part, I have spoken to some ladies who said it did? Wishful thinking probably. I think my tastebuds are coming back to life today, hope so coz I haven’t got any cheese n onion crisps left!! I see you are nowing having to think about surgery after chemo… thats a toughie isn’t it. I wish they would just say… you need this doing… take the decision away from us. I had a single MX (no recon) before chemo with SNB removal which showed 3 lymphs active so I have to decide (by end August) whether to have lymph node clearance or just hit them with radiotherapy. I am so unsure what to go with. All my ONC said was the outcome for both was the same regarding lympodema (40% chance apparently either option) and that removal would give peace of mind they were gone (plus they could tell me how many were infected) but rads would kill them anyway? Not much to go on is it. Regarding the MX, that was the easy part of the op, the SNB removal wasn’t too bad really, healed pretty quick by they only took 3 nodes. The MX healed really quickly, very painless and got movement back within 2 weeks. Can you have recon at the same time? I didn’t want it, but could have had the tummy one or the bum one. I can opt for recon at a later date although not sure I will, I’m used to being flat on one side and its not a problem for me, although I can fully understand others who hate it… I think having to deal with chemo and hair loss has been bigger issue for me, so that may change once thats all over with.
Feenix - you are such an active lady… all those walks and all those places you’ve been puts me to shame, I do a 2-3 mile walk around my village a few times a week, but nothing compared to you! Well done.
Kip or Kop… I’ll answer to anything! :smileyvery-happy:
Hi
Regarding surgery Jean, I’m worried about all of it! I’ve never had an op or been in hospital other than to have the girls. It all just scares me really. Hopefully I will get to speak to the surgeon in the next few weeks as I think I just need some proper information now so I know what to expect.
Obviously lymphodema worries me as I’m sure it does everyone but didn’t know the risk was the same from radiotherapy, that actually makes me feel better in a strange way! I also just don’t want to be laid up for too long, we live in the country so to go anywhere we have to drive so not looking forward to being housebound.
I think I want a recon however I don’t know if they will do it before radiotherapy or not. It seems to vary from place to place.
Re steroids and T I start them the day before chemo for 3 days and take 8 a day. They definitely give me se’s but T itself hasn’t been too hard for me, no sickness or feeling queasy. Although the metal mouth taste seems to last longer each cycle. I think the main thing with each cycle is to enjoy the good days but I’m sure you’ve sussed that by now Kip!
I didn’t get out for my walk today because I had a gynaecology appt regarding the cysts they found on my ct scan. I hate going for any appt now as always fear the worst. I never used to be like that. Thankfully it was a normal appt to confirm what they found and that nothing will need doing, although he did mention whipping out my ovaries but I think he decided regulars scans might be better!
I rang my mum to tell her all was ok and she said “won’t it be good when all this is over” I just find it so difficult to tink about it being over because I’ll be so worried about reoccurring. I’m sure we all think this. Has anyone thought about how they will deal with it or heard of any good counselling service?
Hi Kip
Re hair and T, i’ve been cold capping. I have an even but thinner spread of hair all over my head apart from the top and parting line where it is much thinner. I had also heard of hair growing back during T so have been keeping a look out. I think it would be difficult to see unless a lot grew back but I have had a good look and can’t really see any. Obviously if you don’t cold cap it is easier to tell.
My thoughts at the moment are how long after chemo does your hair stop falling out as mine sheds throughout the 3 week cycle, especially the last week. Will I just wake up one day and it’s stopped falling out? Who knows! Have you shaved? Have you lost all of your hair now? I agree it is one of the hardest things to contend with. Although I have hair I call it my old lady hair as it is so much thinner than before and goes quite fuzzy. Emotionally it feels like you are losing another piece of you. However as everyone very annoyingly says it will grow back and hopefully we will get ourselves back again just a bit bruised and battered. X
Thanks Jean, that booklet is really useful, I haven’t read much yet. The DIEP seems the most commonly spoken about on here but I hadn’t realised it was a week + in hospital and a 4 month recovery!! That’s a lot of down time.
We don’t have a Maggies Centre in Cardiff yet but I believe one is opening in October, which could be good timing for me. But I know what you mean about meeting informal groups and chatting to others who have been through it. I get a lot from that too although I haven’t found many local groups yet.
I also walk for my sanity, to get out of the house for a few hours and because i walk with the same friends everyday my situation is all pretty normal to them now so I feel as normal as is currently possible when I’m with them. Not forgetting of course my dog would be crazy if I didn’t walk her! X
yes I do wonder what life will be like post treatment… I have a friend who is 18 months post treatment and doing really well and she said the reoccurence worry never really goes away but the periods inbetween panics lenghthen and you cope better as time goes on, she gets regular check ups which, of course, panic her, but she deals with it and moves on and as life gets back to “normal” you worry less. She did take up some counselling I think to help her too. I think it changes you forever, I definately will be making the most of life and not worrying over the small stuff anymore…live for now will be my motto!!! As for operations, I think in the end you make the right decisions for yourself, usually the gut feeling is the one, I knew mine was MX no recon from the outset I think but I still ummed and arrghed a lot and read lots of information (the BCN gave me booklets setting out all the options). Take your time and ask anyone and everyone, I did, every friend I saw had to give me their opinon on what they would do.
Feenix - that beach looks gorgeous, just dead dried fields here at present… oh we need rain! Didn’t get to see the fly over either, that took a detour and missed us, usually they fly straight over my garden!!
Cording advice from BCN today was to lie on bed with arm over my head (dangling it off the bed) and “twang the cord until it pops”… … not looking forward to that, but will have a go later, if it doesn’t disburse they will send me for physio to sort it out. What a lovely evening I have in store…
Hi Feenix, that is disappointing about the KK. My first one seemed to be sealed up too, but I found there was a loose thread around the edge that I could loosen and adjust the filling. The ones my Mum knits have a hole in the back which has like a drawstring bit that opens easily for adjusting. She knits them in an evening, I’m sure she’d knit you one and I could post it to you, just let me know what size, she probably has a bag of them already, she has been donating them to our Macmillan centre.
The twanging worked! A little massage and then a few sharp pulls and it popped and disappeared!!! Didn’t hurt either, was soooo pleased with myself that I had sorted one small problem on my own… must keep on eye on it so that it doesnt reappear though.
Thought I’d show you my walk last night… not a beautiful beach like yours Feenix but still the wheat looked beautiful!
Good to keep your options open Jean but as Kip says you know deep down what you want to do and you have to do what is right for you. However you said young and fit counts you out but you sound pretty fit to me!
It makes sense what your friend says Kip about the time between panics getting longer but I agree with you that I have been changed forever. I have no idea what cording is but it sounds pretty awful, glad you got it sorted, and by yourself!
I have noticed the one place my hair seems to be growing back is on my legs! How typical is that!!
I’ve just opened the post and it’s a letter for an MRI scan. As I’ve had a CT, and an ultrasound I though that was it! Seems like they really are dotting all of the i’s. It’s appt after appt isn’t it? And if an MRI is more detailed than a CT what will they find this time?
Each test they do is just more worry.
Oh well have a good day x
Hi J
How are you?
Certainly quieter here now Since Trump headed Northwards!! We had his helicopters circling overhead numerous times on 4 occasions. 2 mornings and 2 evenings. Had no idea what was going on at first. It really felt rather sinister! My daughter said it scared her too.
My SEs are settling down thank goodness. I do think having fewer steroids probably made the nausea slightly worse as they work in conjunction but (touch wood) I’ve not had the terrible psychological issues I had on my first cycle. Did you have any joy with the bras you ordered and getting a pattern for the kks? Xx
Ah Feenix, to have the OH back will be lovely won’t it. As for surgery getting closer… its one step closer to the end of all this…
CDC glad to hear the wounds are healing well now, go buy some new bras… it will feel lovely just to have something new. I must admit I had the Asda front closing ones post op, lovely and comfy but somehow can’t bring myself to put them back on these days… brings back memories… although I think I may need them if I opt for the node clearance after chemo… Actually its funny you should mention bras, before my MX I took all of my old bras and stowed them away in a box under my bed, I couldn’t bring myself to throw them away, it was too painful to think I would never wear them again. Today I got one out and put it on just to see how it felt… was very strange feeling, sad but also made me realise that I was never wearing the right size bra or fit in the first place…the remaining boob didn’t fit properly and was nowhere near as comfy as the new post-op bras which give me a much better shape! Who’d have thought that post-op bras were better! Still couldn’t bring myself to throw them out thought and they are still sitting under my bed… xx
Aww Jean, lovely to have your OH back I’m sure and like Kip says the closer to surgery then the closer to the end of this you are.
Also beautiful picture, is that near Lichfield?!! X
CDC - Of course I don’t mind you asking about the MX, this is the only way we find out true experiences isn’t it. I was quite small chested to being with (34-36A) so hadn’t got a lot for the surgeons to work with in terms of flaps, unless I went for tummy or bottom. My decision was purely based on the fact I wanted the shortest and easiset operation and recovery. At the time of diagnosis I wanted that bugger out and quickly. I did research all options though and asked 101 people what they would do. I also met a lovely lady who had exactly the same diagnosis as me and had had a MX no reconstruction, she was so brave and showed me her scar and let me feel the prosthesis and that really made my mind up. Like Feenix said, dressed you cannot tell a difference at all, I wear the Knitted Knocker as havent got a proper prosthesis as yet but may not wear that at all in the end. I’ve not had problems with underwear, I get bras from Asda and they fit me well, M&S do have some very pretty post op underwear which also helped me decide, I had imagined post op bras to be very medical looking! I have pretty much decided that I don’t want reconstruction but I have been reasured by medical team that anytime in the future I can change my mind. I have got used to seeing myself flat one side, but like I said my existing boob is not that much bigger anyway, although the lady I met is a lot larger than me and she loves her scar… she says “its proof I’ve travelled this journey and won!!”. I also met a lady who had double MX and implants (the ones they fill up over time - expanders I think) and she loves hers and they are pert and beautiful 10 years down the line… but will need lifting and re-jigging shortly, she also had nipples tattooed on both sides. Its such a hard decision to make, and everyone is different. In terms of the actual op, it was so simple, in and out of hospital in a few hours, no stitches, it was glued and just a strip dressing over it for 2 weeks. I did have a drain, but came out in few days. No pain, the worst bit was the SNB removal, the actually MX was painless really, bit numb, still have a bit of numbess at the front because of chest wall shave due to the fact my lump was near the surface. Have you looked at Flat Friends on Face book, there are lots of photos and stories or ladies living flat. I must just say though, although my children have been seen my scar and are happy to look my OH is quite squeemish and will only glance at in, although he’s not great at touching my bald head either!!! I can’t say that I will never have reconstruction in the future… who knows… but for now I am completely happy being a single flatty… I don’t even think about it really, but its not right for everyone… go with your gut instinct… that’s usually the right way to go. Oh yeah… I also get phamtom boob itches and things, there I go to itch and its not there… thats odd but getting less. Take your time with the decision, ask questions, my BCN showed me lots of photos and let me hold prosthesis (which I think can be quite heavy the bigger sizes you get)… that helped me too.
Regarding the phantom itches, nobody told me about it either…and was weird at first, have to say though Marmite it definately becomes less, probably nerves healing etc, I get them still but only occasionally although I do still forget the boob is not there, went to hoist my boobs into my bra (ha not much to hoist as an A cup) but then realised I couldn’t grab that one! Mind you I still go to brush my hair and find thats not there either. The numbness is a lot less as it heals too, I have a patch on my chest wall but that is definately a lot less, and I can feel some touch on there and a bit behind my arm towards my back, but that is pretty numb but doesn’t cause any problems, my friend who had the MX still has a numb patch behind her arm 2 years later but doesn’t cause any issues. I had lots of twanging and pinging as the wounds healed, it felt like my bras strap was digging in and then I realised there wasn’t a bra strap there but it soon went as things healed and I got movement back, important to do those exercises.
CDC as you have already had surgery I guess you know what to expect more from the healing side of things, its just the decisions of what surgery to have. Like I said before I also know a lady who had reconstruction straigtht away and had the expander inplants and absolutely loves them 10 years down the line! She opted to have the non cancerous breast removed too although had to pay private for that one as NHS wouldn’t do both but I think she paid privately in the end for both, she’s just had a tummy tuck too so the surgery certainly didn’t put her off… having said that she never had the joy of chemo inbetween either! Definately visit Flat Friends, its not for everyone but as Marmite said… you can decide to reconstruct later if you wish. Will they be able to tell you whether you need Rads before you make a decision because they did tell me if I had implants they may get affected by Rads and I knew I would be having Radio treatment.
The Knitted Knockers wool - I am not sure what type of wool it is, I think my Mum said it was cotton based, but I am sure you can have them from any type of wool, just wouldn’t swim in the cotton ones as they may stiffen? If you visit the Knitted Knockers website they have loads of info and make and send you them for free (you can make a donation for them), I am sure you can find out there. Maybe its the reconcilliation with your in law that will get her knitting or crocheting you one… who’d have thought… I never thought my mum would be knitting be boobs either!! There is a crochet pattern on the site too. Perhaps send for one and have a look, if you open the bag and think “hell I never want to wear this” then perhaps thats the decision made??? As is looking at the underwear… if it makes you feel like you never want to wear any of that… then may be that will help decide too? I found that I liked the underwear (much nicer than the old stuff I had) so it put my mind at rest about going flat… keep calm CDC it will all become clear eventually…you’ll make the right decision… take care ladies…
Thanks ladies, really interesting and helpful discussion. You’ve certainly given me lots to think about when I see my surgeon.
I had my last pre chemo appointment today with the oncologist. All good, she didn’t have the MRI results Jean but she said she wasn’t worried after seeing the ultrasound results. The MRI was actually on my liver not the ovarian cysts , they seem satisfied with that now too. She said I should hear from the surgery team in the next couple of weeks and have surgery in the next 6 weeks.
I have my daughters birthday and prize giving at the begining of September and was hoping to have surgery before that. Assuming I have a mastectomy and axillary clearance I would appreciate your opinions on whether I would be fit enough to go to prizegiving 2 weeks after the op? All I would have to do is get in and out of the car and sit and watch.
Final chemo on Friday, looking forward to having it over and done with. I hope chemo is going ok for you both CDC and Kip.
Im pleased for you Jean that your OH is home and can go with you to appointments. I find it really makes a difference having mine there. X
Once again thanks for all the info you have put on here, really appreciated x
Yes Jean I do feel like everything is moving along, although never quick enough for me!
I have been told I will have 3 weeks of rads, 6 weeks after surgery. At this point in time I think I will have a recon although it seems to vary between health authorities as to whether they will do it before rads. I am assuming at this point they won’t.
If they say they can do it before rads I’m not sure if I will have it straight away or at a later date when I have recovered from chemo etc. Part of me thinks just get the cancer sorted first. I guess once I speak to the surgeon and get all the info I will have more of an idea what I should do.
This discussion has been really valuable though and given me stuff to think about and questions to ask. X
Hi Michelle, after my mx and snb clearance I was able to go out and about within a few days once the drain was out,. You should definitely be fine after 2 weeks, i was driving after week so even if you don’t feel up to driving you should be fine. Take a small cushion with you to tuck under the arm for comfort if needs be, also helps with drainage of lymph system too I was told. Make sure you do the exercises you get given and you’ll be fine xxx kip
Thanks both I really appreciate your replies. I had my final pre chemo appt with Onc. All going in the right direction, ie shrinking and she said I should hear from the surgical team in the next 3 weeks, so hopefully I will find out more then. I’m sure I will be asking you more questions then if that’s alright with you both.
Kip you were asking recently if my hair has started growing back on T. I was looking this morning and actually think it has come back a little bit on a patch I have on the side so I’m assuming it has too on the top. It is difficult to tell because I still have hair but with thinning patches. Annoyingly the hair on my legs is definitely growing and they need shaving!!
There really is no justice in this world! How are you finding chemo Kip? Are you coping ok? I know it’s not easy but some really seem to suffer side effects more than others. Having said that no one seems to go through 3 weeks scott free. I hope you are well.
I hope you are keeping well too Jean and have had a good day. Have you you been out anywhere walking, we are so lucky with this continued good weather.
Today has been a good day for me I climbed (a small) mountain and took my gorgeous daughters to lunch.
I hope everyone else it having a good day x
Hj Michelle glad things are movjng along for you and great to hear e chemo is dojng its job… makes it worthwhile. Ask as many questions as you like that’s what we are all here for I’m always asking things. I’m doing ok with chemo so far, managing to work still and not too many side effects so shouldn’t moan some do seem to suffer more don’t they.
Thanks Kip and good to hear things are going ok for you. They do say if you can try to keep up your usual routine it helps and also if you are ok with chemo on the first of each type that tends to continue and I have certainly found that and sounds like you are too. Although some days I feel shattered that isn’t every day and as I said I’m near the end now. I hope chemo continues to be uneventful for you too! X
