Maybe that’s it Kip.. just thought that I’ve just updated system on iPad maybe it’s made things glitchy but still no surgery threads.. looks as though it might be me that been archived 😂
Positive and fast mending thoughts for you Kip, and I too hope you are at the top of the list for the day.
Wishing you all the best, and we'll see you after your visit to the twilight zone . . . . x
Sorry for jumping into your thread ...Kip, I was going to reply on May surgery but all the monthly surgery threads have disappeared ... we’ve been archived !!!?... can’t even reply on there ... had my cuppa and biscuits, need to finish fence painting then get back on here and investigate 😈
Hugs to all
Thansk Reddi, yes I am stepping away from Google... its never a good idea but always ends up totally addictive, must has spend good part of Sunday scaring myself silly!
Hi Red Rose (very nice new name... took me a minute to work out who you used to be!!)... the pink custard gave it away as saw the photos on Facebook!
Having level 1 clearance tomorrow, nurse said thats what they can get to easily. I had SNB + 2 more taken at MX and the SNB + 1 had cancer and the third one had micromets. So they have to go...
Sorry to hear your foot/leg is still a problem but sounds like you have been busy nonetheless. You seem to have done much more than me, I have been at home mostly and panickign about surgery, wish it was today so didn't have to wait another night...
Fingers crossed you get that chemo before Halloween... appropriate though hey! Nothing more scary than chemo!
@RedRose It was when I got to "wedding ASAP" that I knew for sure who you are! And then I remembered your preferred rads tattoo! (I was going to say "if I had my druthers tattoo," but I think "druthers" isn't known in the UK? It's a 19c Western US contraction -- for "I'd rather.")
Happy anniversary -- and hopefully a very happy Halloween, too.
Aw, @Kip, pre-surgery wobbles are the norm! Let yourself wobble today, then lots of deep, long breaths to help calm you for tomorrow, even if you end up having to wait to go into the theatre. They'll pull you in when they are good and ready (never when you want them to).
From what I've read, there's lots of debate about staging in breast cancer, and a totally new system has been adopted in the US that takes into account receptors and grade (not just size of tumors, location of tumors, and location of cancer cells). It's pretty complicated, though it seems to mostly come down to receptors, grade, and whether cells have travelled far in the body. So don't google it. You have the information you need -- and the rationale for giving you chemo before this additional node clearance makes good sense to me, too. Healing takes time.
Really nice that your BCN was there when you needed her. 💕
Hi Ladies, hope you all managed good weekends, CDC hope those feet are behaving, hows Numble today? Lisa Marie - how are you hands/arms? Hope they are improving and the last chemo can take place soon. KTK how are you feeling now, are the SEs fading?
Physically I'm feeling almost back to normal regarding the chemo bits and bobs, Tingle is still tingling but I think not quite so much, chemo fog has lifted, taste buds properly back now, just left with achy knees and joints etc, but even thats not quite so bad I think. Although every twinge I freak out and think "its spread". Mentally I'm finding it hard at the moment, constantly thinking of the "what ifs".. I know this is becuase I have surgery tomorrow. I have spent the weekend worrying and wondering what the next set of results will bring...Have had big melt down this morning, those waterfalll tears again, which hadn't really happened so badly since diagnosis and chemo began. OH gave me a talking to but in the end I rang my BCN to talk over some worries. So glad I did, I got straight through to her (a minor miracle at Ipswich) and we talked over the issues I had. I have been wondering why they never took the next lot of nodes out before chemo and she said they decided I would be better off having the chemo sooner as I am young and it would do a clean up job throughout my body and then have the nodes removed afterwards. They didn't want to leave the chemo for another 4-5 weeks for me to heal from further surgery as this had the potential for rogue cells to move around. So that makes sense I guess. She also assured me that they are almost certain nothing will be left in the nodes as the chemo will have killed them off. If I was over 70 they would just use RADS as the effects of chemo are hard, especially on someone of that age so as I am young and have lots of years to to go they use the hardest treatment they can to ensure they give me the best chance. I also asked what Stage I am, as I have never been told and she said iin Ipswich they don't tell you the stage, they don't really use them, just Grades but I could find out if I want to.. not sure if it will help me to know to be honest, another thing to worry about. She was very assuring and very kind and said "just remember you had a bone scan and a CT scan and they showed no problems" so I think that's helped relieve some of the wobbles, I know the worries will return again and again, but nice to hear some positives. I think as the chemo fog lifts I am starting to realise how much I didn't really take in from the Docs etc during that time so good to get some clarity. Now just got to remain calm for the operation tomorrow, hadn't realised I would be so nervous again, nurse also confirmed I will have the dreaded drain again... eek! but that they will just reopen the end of my old scar and go in there, so at least I won't have another scar to deal with. Just want tomorrow over with, am hoping I'm first on the list as hate sitting there waiting, just want to get home again and start the old exercises again.
Anyway ladies, thats my wobbles down in black and white (again!).. thanks for being there, just getting it out in the open really helps.
Take care all...
I'll let you know how tomorrow goes...
@Loolarch The US Knitted Knockers site has patterns, both knitted and crocheted: https://www.knittedknockers.org/make-a-knocker.
I went with the "Knitted Knockers on DPN (Our original pattern," but there are several options. There is also a sizing chart on that page; plus, links to videos if it's easier for you pick up a pattern by seeing it being made. One thing to note on the KK on DPN pattern: if you want the option nipple, instructions for that are at the very end, though you need to start with it.
I suspect you'll be able to do the Imperial to metric conversions, if need be. But if not, let me know, and I'll send you info on the needle sizes. (Sport yarn in US = DK yarn in UK.)
On the pattern is a list of approved yarns -- meaning they've been tested to be suitable for sensitive skin, are breathable, and hold their shape after handwashing. Some of the yarns are hard to source in the UK. I was able to find Paintbox Yarns Cotton DK (cheapest and my ultimate choice), Cascade Ultra Pima, and Universal Yarn Cotton Supreme online and in some bricks-and-mortar shops.
For everyone else: If you decide you'd like to order KKs rather than make them, the place to go is the UK site, https://www.knittedknockersuk.com. (I haven't managed to find patterns on this website.)
Edited to add: Just got an email -- LoveKnitting is having a "knit for charity" promotion for breast cancer awareness month: 10% off when you spend £30 (Code: GET10OFF), 20% off when you spend £40 (GET20OFF), 25% when you spend £60 (GET25OFF).
Cdc, sorry hear more delays witn the chemo but good that they are taking your foot issues seriously. You dont want to have permanent damage. Hope yoh get the gold standard treatment next!
I have been having a panic over my surgery and made the grave mistake of googljng about node involvement.. wish j hadnt as i just scare myself. Has/is anyone else had or heard of anyone having just level 1 nodes removed? I know i i should be thankful they are just taking 1 level but i keep panicking about the rest. Also im worried by the fact that i had chemo inbetween my surgeries, is that normal, most ladies i found either had neoadjuvant chemo then surgery and clearance or clearance and surgery and then chemo... Im doing surgery chemo surgery rads? Im just gettjng myself worked up pre op j think but my head is in a whirl! I keep telling myself that they know what they are doing but im adding 2 and 2 and coming up with 5!! Im aIm also now stressing sb8ut the size of my lump which was 55mm.. thats big! I think mh chemo fug is clearing sna suddenly my brain is in gear and scared!
@cdc Ah, just saw that you are meeting with the surgeon at the Marsden. Given her position, I am sure she will have good counsel on surgical options should chemo be truncated.
@Sally Congratulations on your last dose!
@Kip My pace is *much* slower than 1 per night, but I won't be having surgery til late December / early January, so I have time. However, that's why I delegated crocheting beanies to my mom!
Yes please, a link to the patterns would be great. I got two pairs which arrived just after my surgery and was really pleased with them, it's so touching that a complete stranger goes to all that trouble! Mind you, I am pretty happy being flat, so far only wear my KKs for work!
Wow you are clever Reddi, I have to get my Mum to knit them, she can do 1 a night! I want a swimming one next so will get her on the job! Not that I can swim yet!
Knitted Knockers definitely come in cup sizes -- the pattern I'm knitting from specifies how many rows based on your full bra size, since cup volume changes with band size. If anyone is interested in knitting for themselves, happy to point you to patterns. It's pretty easy. I only started knitting last February, and I'm managing. (One nice thing: since it will be inside a bra, my stitches don't have to be perfect.)
Hi Georgie Gee - I LOVE MY KNITTED KNOCKERS! I now have a selection of them, my Mum knits them for me now but originally I got it from the Knitted Knockers website. My natural breasts were 36A, so I just opted for that size, the great thing about knitted knockers is they have a hole in the back with a draw string and come with some extra filling, so you can adjust them, put some more in, take some out to match your normal boob! I can't remember if they just come in A cup, B cup etc, or whether you put 36, 34, 28 or whatever, bu tI know I just used my normal sizing and that works fine for me. Good luck with that, I have never had any problem being flat, just concentrate on getting better thats my motto!
Kip and Sally,
Thanks for your replies.
I called the bcc nurses and they said that itchy eyes (no eyelash loss yet....) and face flushing could be helped by piriton, so suggested I take one now (no driving) and one at bedtime, and then see whether it makes a difference. I did mention too that I was only on a half dose of steroids, so she said it sounded like a good idea because of that as well.
Also, Kip, when you had your knitted knocker (such a clever name aye?.....) how did you size it? My bra cup size one side is what I would want for the flat side. Mastectomy not yet planned but like you, I don't want all of the surgery for reconstruction etc.
Hi Georgie Gee, well done with the T. Can't help with the flushed face bit, but CDC has had that with Paxitaxel, and hers seems to go after a couple of days, keep an eye on it though, and call that hotline if you are worried. Have you lost your eyelashes yet? I lost mine during T No. 2 and although my eyes didn't sting, they have watered constantly since, it could be that? Watery eyes is a side effect of T. Again, ring that hotline if you are concerned.
I had my first T yesterday.... yay! I had it at last. Only 75%, with only 50% steroids....
They gave me chlorphenamine, also known as piriton, to take up to 3 times a day. I called to ask them which symptoms it helped with... nurse I spoke to didn't know, but will get back to me.
So so far no achey legs or fatigue as it is only day 2, but my eyes are hurting a bit and I have a flushed face which is getting a bit hot and itchy.....
any clues Ladies?
Thank you so much xxx
Thanks for all your advice regarding hormonal son! We've sorted it now, he was very sympathetic in the end, I think he just trys to carry on as normal and forget whats happening, which I can understand I guess.
On another note... A friend of mine emailed me these links for 2 courses for cancer patients which may help with the issues of movning on and living with this bloody thing.. thought I would post the links on here , you may have already heard of them and hopefully they are offered in your areas. I am thinking of doing the Moving On one (which I have seen mentioned on here before). But anythign to help... Also another friend sent me a link to a swimming session for children who have parents with cancer, it is based in Ipswich, but it may be that your areas do a similar thing, I'll post the picture too, might be something useful for someone. Not sure my children would want to, perhaps a bit too old, don't know?
I totally get why you were angry with your son today.... you must have felt as if your own home would be totally overtaken and invaded whilst you go to the hospital for a very scary operation!!
Having had a teenage boy with this hormonal and macho behaviour, a few years ago now (and mostly grown out of the attitude, I relate completely... I hope you have been firm and said that whilst you are going through this ordeal, your home is to be completely respected and out of bounds for his friends..... I am pleased that when he came home you have talked it through; there is no way that I would allow that. Makes me cross!
I hope your your hubby can also stand with you on this one and explain to your son that this is way out of order! I guess there could be all sorts of psychological reasons for him wanting to suddenly be an adult male, doing what he thinks is empowering and justifiable, and entertaining his friends in 'his' space, but I hope he can see your side too; honestly....... but I will stop now or I will get more angry for you.....
Thanks Lisa. Hes home now and weve talked it through.. still feeljng scared, more worried that every node will be affected even after chemo! Oh well at least they will be out!
As for what not to eat, i i w told that 4 weeks after cheno finished i csn eat anything agian and go back to doing ehat i like, ie not havjng tto avoid germs. Unfortunately 4 weeks post chemo ill be having op!!
@Sally P.S. Also -- no grapefruit with docetaxel, as it can exacerbate side effects. I've seen this in various places, including Cancer Research UK.
@Sally Mostly, they are foods with higher chance of being a bacterial infection vector. My chemo nurses gave me a printout of the "Avoiding Infection" information from the Macmillan website; the "Eating and Drinking" section listed foods to avoid during chemotherapy, including shellfish (thus, no prawns), and they told me to follow the bulleted list, even though it didn't technically apply to my diagnosis/treatment. My breast cancer nurse told me to use my common sense in following the list -- so, for instance, I still order some takeaway, but only from places I know and trust and which deliver soon after preparation.
I had a call from the Churchill in Oxford today inviting me along for my rads planning meeting on 1 November at 9am. And to allow myself 45mins to find a parking space 😳 Given at that time of day it'll take 1.5 hours approx to get to Oxford I'll be leaving before 7!!!!
Ive come out in the sneeziest, runniest cold ever - just as well I've not got chemo next week.
Cant remember if anyone's asked/answered this recently - when can we start eating the 'forbidden' foods again?! I'm craving prawns something terrible!!!!
SallyG - good luck with the chemo tomorrow.. yayyy last one. I'm sure the ladies will love the cupcakes, I took some chocolates to my ladies, they do such a grand job don't they.
Lisa Marie - oh it must be in the air. I'm having a bad day today too, am getting very nervous about my operation next week, have fallen out with my son this morning already, big barny before he left as he has invited 5 mates round on Tuesday for xbox day and takeaway and thats when I am in hospital and he can't see the issue, just said "its only an operation" and left the house with a big slam of the door. I burst into tears. I am suffering with mega aches and pains since finishing chemo, almost think I felt better on T!! I feel I will never get to a point where I don't think of bloody cancer every 5 minutes, I feel out of control too. Its horrible isn't it. I was quite positive last week but this week.. ooh I am so scared of everything. I don't know when my rads will start or how many or what hormones I'll be on, but Im suffering hot sweats too at the moment so don't know what that means. This is the worst roller coaster ever!
I'll pull up my big girls pants too and take a deep breath and carry on... and try to avoid those bloody Stand Up To Cancer stories which are freaking me out.. and my daughter how is terrified about it returning since seeing those stories. Don't think I will watch tv for the next week!
Rant over.. come on girls we can do this...