Surgery May 2018

[Kip]

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 

[Michelle21]

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

[Feenix]

Michelle

How great about your results.. a relief. Your last chemo this Friday and surgery in 6 weeks... everything is moving along. Are you expecting to have rads or won’t you know until after surgery?

I can’t help personally with recovery after mx/node clearance ... (any recon?)  Someone will be along though I’m sure. 

Jean xx

[Michelle21]

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

[Feenix]

Kip and Marmite67

Interesting hearing about your phantom boob syndrome... weird feelings I guess. I did get odd pains after wle but no phantom nipple pains that I can recall.

Kip ... I agree about mx bras. There are some really nice mx bras out there. I did like the m&s bralet in spite of the lace... a plain one would be ideal for me as seemed very comfy. Your friend had a lot of hassle but good she loves her implants.... she’ll have had a better outcome having bilateral done.  I know there are permanent expanders available.... get implant to the size you like and then take the port out. 

xx

[Feenix]

Hi Clare

Implants and flap surgery were offered to me although diep would be done in an adjacent area to where I live. Docs are obliged to go through recon as Nice says we have to be offered it so it seems that most of the time is taken up with that. I got the feeling that it was expected that we would want recon although my bcn did say that we didn’t have to and it was available at a later date. My surgeon also said that but only after I asked. Diep is such a complex long op and I’m not keen to do that ... just thinking of potential side effects in general. LD flap uses muscle. Flap surgery is a once only op. Implant is not as long an op but it’s a foreign body and they can be problematic. Any recon has potential problems .. unilateral recon won’t give ‘symmetry’ although we are not normally symmetrical anyway. I think an implant would be so different to the other breast. Unfortunately there weren’t any updated photos for me to look at and elsewhere there’s only examples of bilateral implant recon and they just looked so big and kinda unnatural if you know what I mean. I know there are teardrop implants but apparently they can “move” more  and it’s noticeable as compared to the round ones. They usually need replacing at some date.  Apparently it’s about 50/50 whether women go for recon or not.  It’s a minefield of information and sometimes not easy to get your head round. I started looking at what I didn’t want and went from there.I do find the idea of recon tempting but still can’t quite reconcile myself to it.  I know there are women who are happy to have “something” there,  and those who are happy not to. There’s no easy answer but anything and everything is acceptable. 

I did read somewhere that women who have delayed recon are more happy with the results than those who have immediate !?

Really great that you are accessing the someone like me service.... twill be interesting what your lady says.

My OH is just happy to have me here as he keeps telling me.. nothing else matters. It’s good to have OH home although I was a bit like a wailing banshee yesterday.... worried him a bit !! However, been for preop this morning and talked things through with nurse with OH there this time. In hindsight it would have been good if he’d been there when I had my original bcn appointment. Surgeon may want to see me before op.

I do believe kk’s are made with cotton but not the aqua ones... knitted knickers might be different 😆 ...(just noticed that)

Hopefully you will reconnect with your MiL ... great that she’s a knitter

Great you could be “yourself” when meeting up with your friends and had the confidence to do so.

Hugs xx

[Kip]

Hello Marmite and CDC,

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...

Kip xx

[cdc1811]

Hi Marmite My MX will probably be in December. I’m wondering whether I could have it delayed till after Christmas but in some ways it would be good to start the new year with all my surgery finished. I was originally going to have radiotherapy too but i’m waiting To see if I’ll still need it following the surgery. I’ll definitely need to take tamoxifen (and ovary suppressants) but I’m hoping i’ll have few side effects as my Mum used to take it (now on letrozole) and didn’t really experience any. Fingers crossed. Hope you’ve managed to distract yourself from the itches and can have a restful night, Are you home now? Hope you have a restful night xx

[Marmite67]

Hi cdc

I didn't realise there was such a thing as phantom boob syndrome either but I did mention it to the very experienced staff nurse on the ward (specialist oncology ward so used to dealing with mx) where I spent the weekend.  She said it was perfectly normal and is exactly the same as phantom limb syndrome.  Some of the time I can sort of track them back to an actual physical location and a good rub solves the problem but other times the only solution is to distract my mind with something else.  I did have a lot of general numbness until today but things have been tingling/painful on and off so I guess there must be some sort of healing of nerves etc going on.  I am expecting to have some lingering numbness.

My surgeon was very definite about the option of recon at a later date even though I'd initially completely ruled it out.  He said all I had to do was get in touch with him even if it was a year or two later and he would refer me to the necessary people.

Do you have a date for your mx surgery?

[cdc1811]

Marmite67 I always welcome hearing people’s experiences. Thanks for responding so soon after your op. Hope you are recovering well. . know both you and Kip have phantom itches which is useful to know. Is there anything that relieves them? My younger sister is a specialist podiatrist and sometimes has to advise on foot, leg amputations, I have heard of phantom limb syndrome but didn’t realise you can get phantom boob syndrome too! Do you also have general numbness? I have very slight sensation after my breast preserving surgeries but on the whole I’d say I’m also pretty numb even now and my first surgery was over two months ago. In some ways it makes me less worried about just going for the MX without reconstruction as I can’t really feel anything anyway! I Will definitely have to lose my right nipple as when they did the reexcision they found an area of multi-focal cancer directly underneath. I know there are skin saving mastectomies etc.. but in my case this is not possible. It’s good to know about the option to consider surgery at a later date. Sending a big hug and hope you make a speedy recovery from your surgery xx

[cdc1811]

Dear Kip and Jean

Thanks so much for sharing your experiences.  It’s so helpful!  I only have two reconstruction options although I’m not entirely sure why which are. DIEP flap from the tummy or implants.  Not one of my medical team have said ‘but of course you could just stay flat’ so i’ll definitely check out the Facebook page for Flat friends.  I’ve also got a telephone chat lined up with a lady fro, the Someone Like Me service.  She had a single mastectomy but went for reconstruction at a much later date so it will be very interesting to hear more about her decisions.  I’m hoping my OH and daughter won’t be phased by the scarring if I just stay flat.  Both enjoy rubbing my stubbly head!! I’ve got time to consider my next move and will be seeing my surgeon again before my penultimate chemo.  Just another question - I am highly allergic to wool and acrylic.  What are the knitted knickers made of?? My mother-in-law is a fantastic crocheted, knitted and used to knit me hats made with cotton yarn,  We had a big falling out and I haven’t seen her in over a year but she recently e-mailed me and sent a card wishing me luck for my treatment.  Her sister went through surgery, chemo etc.. for breast cancer a few years back so she know what it entails.  It would be strange if we end up reconnecting by her knitting me some cotton boobs!,  

Hope you’re enjoying having your OH home Jean and hope your having a good week Kip. 

I had a brave moment today when I met up with two of my dearest friends for lunch. We met in a large cafe near Kings Cross station.  Haven't seen them since my diagnosis.  My head was itchy and hot under my beanie so I just took it off and sat there with head uncovered having a good old catch up.  Both were very complimentary about how I looked bald then nothing more was said and I didn’t even think about it.  It’s given me confidence that in certain situations I can go without a hat or headcover. 

Onwards and upwards. Xxx

[Marmite67]

Sorry to jump in on the thread but thank you Kip.  You've just made my day.  I had a Mx on Friday and nobody mentioned the phantom boob itches.  The first time was really really weird.

It itches as it did before and you go to scratch it discreetly as before and there's nothing there.  It usually takes me about 5 minutes to work out where I need to scratch to stop it and of course half an hour later it itches again.

I'm also happy to answer questions about my Mx as I didn't really have much chance to discuss with/met anyone with experience prior to surgery.  At the moment I've decided against reconstruction but have also been told I can change my mind at anytime.

[Kip]

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.

KIp xx

[Feenix]

Michelle

Im on the east coast so not Lichfield. Yes, I hear what you say about surgery...hoping histology will be ok afterwards. I know how fickle they can be !! It’ll be good to have OH home 🏡 

I hope you’re  doing ok... not long before you have your last cycle. Are you any nearer to getting an appointment for surgeon? Have you had MRI yet?

J xx

[Feenix]

Kip ... I abandoned bra hunting although did try a few on ... m&s have a nice bralet type postop bra but the lace irritates somewhat. Thought I’d better wait.

Clare ..I think it was a Macmillan box I put them in. Your bras will certainly be appreciated. My cousin has to get hers from a specialist bra fitter and they’re definitely not cheap. 

Nicola Jane shops are supposed to be good. 

I’ve butted in here but Kip will give her invaluable experience. Others may come along too. 

Since having wle then re excision I am noticeably smaller on my bc side ... it looks different as I had to lose my nipple area. I basically had 2 wedges taken out from top to chest wall but you do get used to being “different” don’t you. I would have been quite happy as I am without any other surgery. As you may have noticed I’ve been giving myself headaches thinking about recon. Kip, Sally, kitkat23 had no recon and Ive  looked to them, and others, for feedback. I’ve looked at threads, asked questions etc. I’ve found that age doesn’t determine who has recon. I’ve had young women in their 40’s who chose no recon and in their 70’s who did. I’ve found that no matter whether a woman has had a flap, silicone implant (or both), or no recon the one thing they all say is that they look ok when dressed.... they’ve had to adjust no matter what they chose. I can probably tell you the pros and cons of all options as I’ve read enough !! Depending on expectations there’s always more surgery/tweaking and  the process can be a long one. It’s hard going through info and trying to decide but recon is always available later. 

Yes ... OH on his way. 

Xx

[Michelle21]

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

[cdc1811]

Hope your OH is having a good journey back Jean. Have a lovely reunion xxx

[cdc1811]

Oh no- just realised my message isn’t displaying! Oh well I was just mentioning the Bra Bank charity but I might see if my hospital does something similar to yours Feenix. As I was an unusual size 32/34 GG(!) I had to get my bras from specialist shops and they were very expensive. Hate to think of them going to waste. I’m pleased you like your new post op bras Kip but can understand why there is sadness when looking through your old ones. I hope you won’t mind me asking and I know you’re facing more surgery but I’ve been freaking out about having to make a decision with regards to the MX I will have to have after chemo. Are you considering reconstruction? I was thinking about it but not so sure now as I would quite like to avoid such extensive surgery. I really wish my therapeutic mammoplasty had been successful as I’m pleaased with the results even though, since the re-excision, my right side is noticeably smaller. I’m finding it hard to get my head around being lop-sided or having nothing, I don’t want to be insensitive but would really value hearing your experiences and thoughts. I live near a Nicola Jane shop which specialises in post mastectomy underwear and swimwear. I’m tempted to just go and have a look and see what my options would be with regards to having a prosthesis. Xx

[Kip]

Good luck with bra shopping feenix.  I've not heard about the prosthesis fitting yet, must chase that up..  just something else to chase x

[Feenix]

Yes, definitely great OH is back tonight Kip.

I think it’s amazing how we never seem to have the correct size bra on. I must admit Ive always gone for comfort, never been one for wires. It doesn’t matter how often I get measured tho it’s the bras that aren’t universally the same size so still have a hassle finding one that fits well and is comfortable. I’ve got a couple of m&s post op bras.. the comfort brand not the tshirt type as they’re too heavily padded... they’re not too bad but even they have a suspect fit as they seem to squash boobs together. I’ve seen someone somewhere say the same thing. However I can wear one all day. I’m popping back to shops this afternoon to have another mooch around the bra sections. 

Its a shame about your old bras Kip. Some women manage to get pockets put in theirs. I donated all my old bras at Breast clinic. I’m waiting to see what size I am when it’s time for a fitting post op... see what bra I’m given then prob bulk buy. Still looking for my usual size to try on in the Asda post op bra. 

Have you made an appointment for your post op fitting yet? I think you and Sally were way overdue.

xx

[Kip]

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

[Feenix]

Morning ladies

Hope your se’s are minimal and meds are doing their job.

Ive pull on bras from m&s and find them comfy, also the front fastening Asda ones although being racer back they can’t be adjusted strap wise. 

Pleased to hear your wounds are sufficiently healed Clare ... that must be such a relief.

OH is back tonight so tracking flight. The time has gone over so quickly. Great to have him back but it means nearer to surgery ... bl**dy he** I’m getting to be such a wuss !! Just can’t recognise myself sometimes 👀 

Weather quite nice again but expecting a bit of rain I believe. Busy catching up on a few household jobs, thought I’d better make the effort 😆 

xx

[cdc1811]

Wow that looks simply stunning! Yes a paddle in that water looks a must! Must try and get to the coast at some point this Summer. I’ve heard that the pull on bras from M&S are comfortable. Might try and get some too as I think my wounds have finally healed sufficiently and psychologically it would be good to get out of my post-op bras. Hope you have a good week. Take care
Xxx

[Feenix]

Hope you’re doing ok Kip

[Kip]

Beautiful picture

[Feenix]

Hi cdc..Clare. Glad you’ve avoided the huge downer this time. Yes, it’ll be good Trump flew north and taken all his choppers with him.

 I sent for a couple of bras but they didn’t have the size I really wanted to try. It’s a pity they don’t have these bras in store. I can easily get away with a pull on cotton rich bra though so might get try them tomorrow.

I’m washing, cleaning and got the tennis on at the minute so no time today 😊

I’ve already got the pattern but bcn has some kk’s. 

Ive had a walk along the promenade this morning... busy with the water sport fraternity doing their thing ... plenty of strollers with their feet in the water. I really must keep a towel in the car!!

Hope you’re keeping as cool as you can

xx

[cdc1811]

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

[Feenix]

cdc .. Clare hope things are going ok with you today. Good to see genetics are ok but can see your dilemma re not being able to be given prediction for recurrence. Looks as though you’re already thinking about your options. Hopefully it’ll be quieter where you are with Trump not around.

Kip ... hope you’re doing ok and getting out and about.

ktk... still fishing? Hope you’re doing ok 

Ladies hope any se’s are minimal and meds are working.

I see it’s going to be hotter today.

Xx

[cdc1811]

Thanks Jean xxx

[Feenix]

You ladies are certainly rocking the liberating look ...  ktk 👍 

[cdc1811]

Sorry not sure what word was auto corrected to kids. Maybe kks!

[SallyG63]

Ha, got to.love autocorrect.

I also hope you find suitable kids and bras Feenix 🙂

[Feenix]

cdc.. hope those meds are still doing the job and great you’re getting sleep. The match ...England did good to get to semis.  It always seems to takes me ages to find a comfy bra anyway and it doesn’t help that I dislike bra shopping in general !! Kk just not made as expected. Hope your wounds have settled now. I guess you will have to wear a particular bra, for a certain time, after having a mammoplasty. Great pics on your chemo thread by the way.

Jxx

[cdc1811]

Forgot to say sorry to hear of your kk problems. Hope you find some suitable kids and bras soon. I’m still in my free post surgery ones from the hospital. Totally different size to what I’m used to but I guess all the makes and styles differ slightly. I’ve heard good things about ASDA ones too,

[cdc1811]

Thanks Feenix Unfortunately I ended up vomiting three times once I got home but feel so much better today after a good night’s sleep. Anti-nausea meds seem to have kicked in to. Hope you enjoyed your walk. Can’t bear to watch the last few few minutes of the match! 😬

[Feenix]

Clare ... hope you’re doing ok after your second cycle yesterday... 👍 you’ll have minimal se’s. 

ktk  .. hope you’re doing ok after your second cycle today.. same again re se’s.

Its lovely and cool now

Good time for a walk before the Big Match tonight

J xx

[Feenix]

Michelle ... another scan !!! .... they do like to keep you on the go. As you say more worry. I’m presuming that was from your gynae appt.

I could be fitter Michelle. I’m a bit overweight still but I’m going to try and lose more .... need to up exercise though and tone up as much as poss. I’m not getting younger...63... but it’s just a number. There’s lots of pros and cons with everything but recon can be delayed. I’ve found that age is not related to whether women have recon or not and there are many factors driving what choices are made. There are also women out there who don’t have the option. 

Maybe I should stop watching tennis, get up and move. I’ll be sitting in front of box later on tonight. 

Jxx

[Feenix]

Kip ..it’s a beautiful field and a great view on a walk ... out in the open. Reminds me of here... haven’t been across the fields since before OH went away.  The kk has its filler opening on the side seam. I was expecting it on the bottom but like I say there’s a tether from the middle there to the apex .. there’s no give. Putting more stuffing in distorts it and the diameter then = A according to the pattern I have but will be a B if stuffing removed. I probably did myself a disservice when I asked for the size I did but I’ve been in A cup to D ... depending on band size and bra shape. I’ve been sizing up Asda bras and will send off for a couple of their post op ones. It’s a shame they don’t sell them instore. I’ll keep in mind the offer of one of your mams kk thanks...bcn said they have them also + I’m going to give one a go as pattern seems easy... might be seeking your mams help !!

Well done sorting out your cording. Keep on with your exercises so it doesn’t reappear.

I popped onto chemo thread ... saw your pics and have to say they’re great. Love that you ‘flashed’ the women in the shop... you certainly got them flustered... rubbishy conversation from them though. Definitely get the Doc Martens on next time 

Jxx

[Michelle21]

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

[Kip]

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!

Kip

[Feenix]

Hope the twanging went ok last night Kip. The things you’ve got to do !! Hope you’re still on the up with se’s.  Got KK yesterday ... it’s smaller than I expected, and has a tether in it from top to bottom so can’t really expand it ... bit disappointed....and I sized from bra I had on !!! I always have probs with sizing and fitting. Off out this morning to try on some bras.  Will have to find knitting needles now.

Looking forward to footy tonight.

Jxx

[Kip]

Hi Michelle,

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... 

Have a good evening everyone..

Kip xxx

[Feenix]

Michelle ... I did read diep is a good op for the young and fit so that’s me out 🤔 It is a long and complex op and a once only op. It does have a longer post op and long term recovery.  I actually could have a referral to a team who does flaps but declined at the time ... I did feel I was being steered towards recon but I like to mull over anything and everything and recon hadn’t entered my mind at all... wasn’t expecting a mx tho.  Even now I feel I’m heading toward no recon then I have doubts ... it’ll just get worse as I get nearer to op then I’ll prob look like a rabbit in the headlights again... hey ho. But it’s still an option.

keep on walking, keep up that sense of normality

xx

[Michelle21]

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

[Feenix]

Hi Michelle

Pleased your gynae appointment went well. It’ll have been such a relief as, yes, we always imagine the worst. I’m told it gets better with time but Im sure we all wonder whenever there’s something niggling us, or we have what should just be a routine appointment.

I know there’s counselling available at Maggie’s centres, probably Haven, depends if there’s a centre near. Probably bcn’s will be able to help with that also. There are informal groups like bosom buddies where you can meet up. I don’t know whether I would take up counselling but it’s good to know it’s available. I’d probably be more for informal chats or meet ups with other women who know what it’s like.

It’s good that you’re thinking about surgery. Once you get to speak with your surgeon you will get your options and be able to ask your questions. The unknown is always scary as you’ve nothing to compare it with. Our minds go into overdrive as well imagining the ‘worst’. I think it’ depends on what kind of recon is done ... permanent implants can distort with rads. Flap recon has “variable radiotherapy tolerance” (that’s out of recon book I still have). I’ll post pic I took out of Macmillan recon booklet I got also. I think we all worry about lymphoedema but obviously there’s more risk after anc but it’s equal to having rads to axilla as Kip says. 

Cool weather is good

jean xx

[Michelle21]

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

[Feenix]

Hi Kip

You make me sound better than I am... Im still trying to get my weight down so I’ve got to make the effort. You get out and about a few times a week which is good and don’t forget about your hooping. I like to get out for my sanity ... helps me destress. 

Did you get in touch with your bcn about your possible cording?

Im with you when it comes to recon ... unless you really know what you want, or not as the case may be, it’s not such an easy decision but the options are still open. I’m still pondering 🤔 but it does give me a headache just thinking about it. Fear of the unknown has a paralysing effect.. in this case it got me up and out.

J xx

[Michelle21]

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?

Hope everyone enjoys the cooler weather xx

[Kip]

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!

[Feenix]

What a bloody rubbish night you’ve had Sally  ... you’ll be knackered. Hope you’re getting your scan first thing and get sorted asap... surprised they let you home.... sending hugs 

clare ... great you’re having your cycle 2 today ... here’s hoping you don’t have a long wait this time. I see you’ve got a cool new look .... 👍 😎 

Kip .... hope you’re feeling more yourself today and you’re tasting more than cheese and onion crisps 😊  

ktk ... you’re becoming an expert fly fisher ... love that the 🐟   go back in. I think you’re due cycle 2 tomorrow so hope that goes 👍 

Hope it’s a bit cooler where you are today

Jxx