Hi
Lou, Ihope all has gone well today. I got the cotton cap from scarfhut. Ordered late one afternoon and it was here next morning. It’s not the most flattering of things but it is functional. I also sometimes wear it around the house if I’m a bit cold although I generally prefer nothing.
Yesterday when I called into work a friend who went through all of this a few years ago told me that I shouldn’t be having blood tests or blood pressure done on my operated side. A phlebotomist who was sitting close by said that she would never take bloods from the same side. I know that they are reluctant to do chemo on that side because of lymphoedema but no one has told me this. Babs has also been told other things differently from me and I don’t know if this is because ideas have changed or because it’s different hospitals. I phoned my bosom buddy(who i was in hospital with for both ops) this morning and she had never heard it before so it wasn’t something I had just forgotten. Fortunately for bosom buddy she was 2.7 on npi and is managing to skip chemo and starts radio next week. I’m alittle confused and was wondering what advice others had been given.
Well it’s lunchtime and aging father is asking whats available so I’d better go and sort something out.
Nicky
Hi Nicky
BCC have published a factsheet called ‘Reducing your risk of lymhoedema’ which you can read via this link, it may help you with some of your queries:
breastcancercare.org.uk/upload/pdf/reducing_risk_of_lymphoedema_0.pdf
Hope this helps, our helpliners will be only too happy to answer any more queries you may have on 0808 800 6000 Mon-Fri 9am-5pm and Sat 9am-2pm.
Best wishes
Lucy
Hi Nicky, I was told, by surgeon, bcn and oncologist that I shouldn’t have any needles or blood pressure taken on thae operated side (I have lymph node clearance). When I was on ward after op they took my blood pressure on my leg. I spose it makes sense to be careful, even if you get a little scratch on affected arm it has to be thoroughly cleaned and have anitiseptic cream on it. It’s worrying though when you hear of other people that haven’t been told about taking precautions but I know that any sort of puncture wound (which could lead to infection)is to be avoided. When I had my first op, I was on an orthopaedic ward and the nurses there weren’t aware of avoiding the operated side - the male nurse went to put the sleeve on my right arm and I said no, he should do it on other side or leg and he laughed! But when I explained he was quite happy and said he had learned something!!
Lou, hope all went ok today? I feel ok, chemo brain is setting in again but nausea under control. And I have hair! Feels strange but am giving it (my £10 wig!) an outing tomorrow if I feel ok. I think the steroids I have for 3 days after chemo def give me a boost which is very welcome. And my daughter came back from the shops with a gorgeous bunch of flowers so my day has been wonderful. OH is taking mad dog to the vets as she has run out of her steroids - we’re all at it in our house! - we must be the only people to have a dog that’s allergic to grass and she has to have steroids and eardrops and special shampoo regularly. Our vet if forever on hols and I swear we finance half of them! Thank god for pet insurance, although we can’t claim anymore for her allergy as that cover was only for a year. so bank balance will take a hit later on.
Hope everyone else is doing alright, will check in later and for now love and big hugs, Pat x
Hi ladies! Hope all has gone well today and everyone feeling ok? Nicky on the lymphoedema thing, I developed it in both legs 3 years ago after groin node clearance and attend a clinic where it is monitored. When dx with bc my physio who I see there reinforced that no bp or injections should be given on the side affected but the nurses on the wards have always checked and seem to be aware-I also carry a medical alert card for that purpose.
Finished meds on Wed and deflated like a balloon yesterday-completely shattered! Slept better last night but similarily had really wierd dreams though can’t remember what they were!! Then this morning woke with what felt like a hangover…without the enjoyment of the night before!! Fuzzy head and tummy, but so far nothing worse than that.
Daughter came home with streaming cold last night so am avoiding her like the plague-don’t want to risk infection…think I am a bit paranoid about it?
I got a free Buff soft hat from the ward on Monday, which I wore at night when I still had the conditioner in my hair and it was comfortable-there is a website for them with demos of how to wear them. Also thought that if I do lose my hair it would give a bit of fullness under a scarf or hat.
OH away playing snooker just now so better go get tea ready-chilli beef so hope my taste buds can cope!
love and hugz,
Lyn xx
Morning Nicky,Pat and Lyn xxx
All seemed to be ok yesterday,the nurse gave me an I.V anti-sickness this time i was so poorly last time - that worked really well - it’s the streoids that give me that awaful ‘swimmy’ head - yuck!! even managed to do the long awaited ironing in the afternoon, but by the time i was finished i was shattered!!!
Slept much better last night though they have given me some sleeping pills if i should need them. No odd dreams about horses last night…
I dreamt i was walking through a field full of horses and they were all either grazing or sleeping - i was stroking some as i walked through, then i touched this enormous black and white one, he reached up as high as a giraffe and bit me on the ear!!! blimey did i wake with a jump!! OH now thinks i’ve completley lost it!
I have also been told no BP or needles on the left side -that was the same when i had my previous cancer and all lymph nodes were removed ( cervical cancer) - I can remember me giving a nurse a very hard time, i had been given a leaflet not an hour before explaining why, then she comes round and ask which leg would i like the injection in??? mmm, short fuse again me thinks!
Thanx Nicky, i will have a look at the sleep hats x
Anyway lovely ladies,i think i may wander back up to bed for a tick, still feel exhausted, hope you are all having a good day?
Be back later, love to all, Lou xxx
Hi Nicky,
Just a quick note , found the website for the hats - what a lovely choice and so reasonably priced! Have ordered 3,as i think hair maybe a thing of the past for a while!
Thanx for your help,
Lou xx
PS: scarfhut in case anyones wondering!
Hi All, Lou, glad it went okay yesterday. I too have had the most surreal dreams lately. The strangest one was a few nights ago - I dreamt that I went to Barack Obama’s house!!! - not White House, and I met his wife and his two daughters were toddlers. We had a meal together - how bizarre! My OH def thinks I’ve lost the plot - I’m putting everything down to ‘chemo brain’. Had a scare last night - site of cannula swelled up and reddened last night, and there was a hard little bump just along the vein, and pain. Thought it was clot so phoned on-call oncologist who reassured me that it wasn’t clot but phlebitis. Apparently poor vein doesn’t take too kindly to the toxic liquid being pumped thru and sometimes reacts. Very relieved and felt a bit daft but OH said better to be safe than sorry and Dr was very nice. He suggested ibrufen but I can’t take anti-imflams coz of asthma so will just keep an eye on it. I’ll check that hat site out too, I haven’t wore wig out yet but may go for a walk later and give it an airing! It’s not too blowy so should be safe! Actually it feels v secure and is adjustable, and you can always put a hat on top as well I guess.
OH took dog to vet and bill was only £40 - very pleased with that. She has an ear infection so am administering steroids and ear drops to her, we’re consoling each other! Well, hope everyone has a good day - sun is shining here so am gonna try and get out in the sunshine for a bit. Will check in later, for now love and hugs, Pat x
Hi everyone
Thanks to all of you for your advicce about the lymphoedema. No more blood tests from my operated side and I will pass that advice on to Bosom Buddy.
Pat, sorry to hear about your canula site. My arm was sore along the vein after the first chemo so the hospital gave me Hirudoid cream which is for superficial thrombophlebitis. It may be worth asking your chemo people about it. My arm has certainly been a lot better this time.
I went on a rubber stamping workshop for card making today and had a great time. With all this time off work I thought that I would get loads of cards done but I had to force myself to do all the Christmas ones and haven’t been able to get up the enthusiasm since. Hopefully today will give me the boost I need.
Casualty is due on so night all. Nicky
Morning all and hope you are having a nice weekend? Hope your problem settling Pat? Also Lou feeling better this time?
I am still having probs with sleeping so with 2 daughters out on the town last night and coming in at god knows what time I thought a sleeping tablet might be wise…never heard them coming in and didn’t wake til 10am, which is unheard of for me. OH left me to sleep then conjured up a nice breakfast when I appeared-he can do it when he likes!!!
Still feeling fuzzy headed too and completely lacking in enthusiasm to do anything, but may try a walk this afternoon as once again snow forecast for next few days, though it never came last time! Does this heady thing clear at all during the 3 weeks? Also sore mouth(didn’t help when I put my usual dollop of mustard on my bacon…??)-will know to avoid that from now on! Cleaning teeth reg and using mouthwash but doesn’t seem to be helping.
On plus side got a call from a really nice lady on Friday night with an invitation to look good feel better session next Tuesday so that should be good-much quicker than I expected. Also app tomorrow as wig has arrived. Funny thing is wig is in my old style and everyone says how much I suit new cropped style…sod’s law!
Off to put my feet up with papers,
Hugz,
Lyn xx
Afternoon everyone, hope all are well. Thankx Lyn, vein has settled down, will get them to use a different vein next time. The mouth thing is horrible, mine usually starts 3 days after chemo and I find it hard to swallow without gagging. I do find it clears by beginning of 3rd week but eating isn’t as much fun when everything tastes bland. I didn’t manage to get out yesterday, just crawled back to bed for the afternoon and got up int the evening for a few hours. I just go with the flow and know it’ll pass eventually. One thing that did brighten my day yesterday was watching Todd Carty on ‘Dancing on Ice’ - did anyone see it? Daughter downloaded it from youtube and we were both in a heap, highly recommend it to get a much-needed giggle! Lou hope you’re feeling okay? The snow is on it’s way to London so may find getting out bit more difficult but I’m def going outside tomorrow or I’ll go mad. Wrap up everyone and take care. Enjoy rest of weekend, love and big hugs, Pat x
evening all!!
Had a really lazy day today, just can’t seem to do much, the when i do i feel knackered,so have just gone with the flow - and slept most of the day!!!
The taste buds have gone today and also have terrible indigestion, which just won’t go.
BBBBrrrrrr, it’s sooooo cold out now - OH belongs to the singletrack forum - chap posted a picture - was going to the pictures tonite, and his front door open with snow to the top of the door frame!!!
Not sure if we’ll get it in the old southwest, we’ll wait and see!
Thomas is desperate for some decent snow!
Well, in between sleep bursts i have made a chicken casserole, so i’d better check on that, hope you are all well today, lyn,pat,Nicky and everyone else!
Big Hugz,
Lou xxx
Hi everyone
This is one day I’m glad to be off work!I’m sat watching the snow whilst I’m nice and cosy inside. I took the dogs out at my usual time of 7am to meet a friend. It was lovely over the fields whilst they were pristine white and the dogs all romped around like puppys again. Thankfully we caught an hour whilst there was a break in the snow and it started again just as I got home.
My taste has just about returned and I can enjoy a cup of coffee again. That is the thing I miss most. I have found that a drink of lime and soda makes my mouth feel fresher for a short while.
I did see Todd Carty on ice lasst week and had a good laugh. Unfortunately he managed to stay on the rink last night and wasn’t as entertaining.
Well I’d better go and try to get some inspiration to make some cards. It is my neices engagement party, her mothers birthday and her sons 1st birthday on Friday so I have plenty to do.
Hope you all enjoy the snow and that none of you have urgent journeys - my bosom buddy starts her radiotherapy today and has a 40 mile round trip so I’m hoping that her journey is ok.
Nicky x
Hi Pat, Lou, Nicky and all! Pat I was hoping my mouth would clear quicker than that…aaaarrrggghh! It’s been horrible today-foul taste despite brushing and using mouthwash!Bought some lovely cherries yesterday and thought there was something wrong with them! Daughter assured me there wasn’t as she tucked into them!
Was into town today (NO snow here LOL!!)and collected wig. The hairdresser trimmed and thinned it and when I modelled it for daughter, who is ultra style conscious she said it looked really good so that has boosted my confidence no end.
Fuzzy head much better today and have felt less lethargic, though still needed a rest when we got home.
Is it just me or what? Two “friends” texted this weekend to ask how I was…fine… and at the same time asked when next chemo was???
I think if they had been there I would have hit them…as it was I didn’t give them an answer! Just feel that I am getting used to the first one, and not even contemplating the next…or the next???
Anyway hope everyone is well today and enjoying your snow?
love and hugz,
Lyn xxx
Hi all from snowy London! Nicky, glad your tastebuds are back, it’s heaven when it happens. Lyn, I so know what you mean about the taste thing - last night I ate cottage pie and tonight beef hotpot, and both tasted like cardboard! Tried to eat some spinach and that tasted so vile I couldn’t. I have lime and soda Nicky so am gonna give that a try. Since yesterday it feels like I’ve got a huge lump in my throat and it makes it hard to even fancy eating, doesn’t it? Feeling v fed up but am gonna persevere and go out tomorrow if it’s not too icy. I must admit the snow looks lovely but OH can’t work (drives for a living) and he’s also just come down with a rotten cold. Lyn, I bet wig looks great, gives you a bit of a boost which is always welcome. I know what you mean about friends - I’ve been totally ignored by two that I used to work with and got on really well with them, when they saw me coming they looked or walked the other way! And I felt bad that I’d made them feel uncomfortable! Urghhhhhh!!! sorry, rant is over, just having one of those days. My good friend said to me that next week I should get dolled up, and go out with OH for Valentines Day, last year OH took me to Royal Albert Hall to See Madame Butterfly, we were in a little ‘box’ and everything and it was so special. Must make the effort. Is anyone else snowbound? It does look magical and best of all, it covers the weeds and makes garden look nice! Todd Carty didn’t do as badly (or hilariously) as last week but I still got a laugh watching him on Dancing on Ice, it’s the facial expressions, like he’s got a bee in his mouth! Lou, hope you enjoyed your casserole, and that Thomas got some snow. All the best to everyone and take care, love and big hugs, from Grumpy Pat!! x
Hi you lot! It’s not just me then! I’ve been too grumpy to even be bothered to post on here. How bad is that? I know what you mean about ‘friends’ and my ‘lovely, everyone should have one of these - not’ sister. Sick to death of them all ringing me over the last few days and - without even asking how I am - or, more importantly, can they do anything for me?, but instead harping on about when my next appointment is! Why, what’s that all about? My next door neighbour and her family all scurry - no, run - literally, back indooors whenever they see me coming, and I’ve known them for 26 years. It’s so bloody hurtful. My neighbour the other side said people don’t know what to say, what the f**k is wrong with ‘hello’, that’s what they used to say! I knocked with the Sunday paper money yesterday (they’ve always delivered it for me every Sunday) and I could hear them clearly arguing about who was going to answer the door to me, i.e. “it’s Jackie, you go, no - you answer it” several moments later the mum came out and didn’t even look up. I swear to God, if - no when - I get through this, I’m gonna blank every sodding one of them, and they can shove their “News of the World” where “The Sun” don’t shine! Had to give my self-employed job up due to this bloody back never going to heal, and have just been given £60 a week benefits. So peed off it’s untrue. Now I’ve upset myself again - poor me, pour me another one! xx Jacq xx
Hi jacq…I must say your last comments made me smile…sorry but you do seem to have a wicked sense of humour. I can totally relate to it all. My so called best friend rang me last night to see if I was “feeling better” and to let me know how her packing was going for her New Zealand trip. Wanted to know what I did all day and how she couldnt possibly be at home like me as she would be bored stiff! Hello…I dont err have a b choice! Came off the phone all wound up. 2nd chemo Monday,…Good luck to you all x
Thanks Yogi. Think there was a compliment in there somewhere - if nothing else - about my sense of humour. It’s always been bad, but it has definitely got worse. To be honest, I wouldn’t be overjoyed at living next door to me at the moment! Weeeeell, these bloody people. There’re out there now, scraping their bloody path for the upteenth time - must open the front door so that they’ll scurry in. Don’t know why they keep clearing it, they don’t go anywhere - except out for the Sunday papers. All they do is bog out of the window - perhaps they’re frightened the snow will go up past the windowpanes. (They’re a family of shortar**s) Ok, done that and they’ve gone in, and now they’ve started on the back garden - aaaargh. Need yoga, need to meditate, need therapy. Love and hugs, what d’ya mean I don’t mean that?! xx Jacq xx
Oh Jacqui, you did make me laugh with that last post!! Know what you mean about neighbours-haven’t seen mine since Oct when I was diagnosed, apart from a Xmas card which said “To DEAR friends”, and last week when she came out of her shop just as my daughter and I were walking past…the expression on her face was priceless as she had to speak…speak about embarrassed…she just bleetered, to use a good Scots expression!
Pat glad you enjoyed your outing-I am off to the theatre on Saturday with a group of friends-it is a joint 50th birthday outing for 2 of them which we booked months ago-going to see Calendar Girls-meal first, show then we are staying at an apartment in town-normally that means lots of wine but think I may have to be a bit more cautious than I usually am-also hope the mouth is a bit better-got a presc today so hope it works. Had to have a blood count done as they think it may be down…don’t know what that means if it is?
Hope you are all enjoying the snow…it’s just raining up here! No fun! Take care and love to all,
Lyn xx
Hi, i am new to the site , I had a WLE and 4 nodes removed on 6th Oct thinking that would be me but i was then told i had to have a mastectomy and all other nodes removed as well which was such a big shock to me. Had my mast done on the 14th Nov which i am very pleased about it looks gr8
I started my first chemo on the 29th Dec, 4 Epi-4 Cmf i was very scared but now i am on m 2nd dose of Epi i feeling ok not got many side affects which is good.I was told by my chemo nurse that my hair would fall out about around the 19th of Jan and it did it went very quickly, but i got my wig which looks good so i am getting used to being bald, the kids don’t mind either now they think i look like their papa which is quite funny. My head is very sore did anyone else have this?
lol joanne xx
Hi Joanne and welcome! I can’t help you with your query as I still have my hair though for how long I don’t know! Some of the others will probs be able advise later. hugz, Lynxx