FANTASTIC. Super to read your upbeat postings but gosh you have been through the mill. Your family must be so relieved. I am a Hickman Line pro now don't worry if it doesn't give blood just pull your shoulders back and breath out. I have got it to a fine art now after many trips to the unit because it wouldn't produce anything.
Sun is shining you are home ENJOY.
Hi All BWF!!
Am finally back after 11 days in the hospital.what a pain in the bum that was!! apart from the blood clots on both lungs my heart rate went up to 204bpm (felt a bit odd to say the least) and i became neutropenic while i was in there so had to wait for my count to go above 1 before they let me out!!
Am so glad to be back home with my lovely family :O) thank you soooo much for your virtual hugs and good wishes.
Got tax 1 next week, will be glad to get it over and done with and hopefully won't take long now that i have the hickman line!
Good luck to all having treatment
Love Sarah xxxx
Hi girls, not posted for a while again - have actually managed to come into work occasionally over the last 2 weeks! Just something to note though, I had a dodgy eye on Monday (seeing faces distorted!) so rang hosptial, told me to go in, did my bloods, looked at eye - ok. When my bloods came back they said my red cells were very low and I was very anaemic so needed a transfusion. They were surprised I didn't feel exhausted but I'd felt quite well, get tired if walk too far but put that down to chemo. So if I hadn't have gone with my eye and found out, chemo may have been cancelled tomorrow, just wanted to make you aware.Keep wondering what se's will get with the T tomorrow - soon found out I suppose!
Love Katieb (Stella) xx
Oh Val what a pain after all that anticipation. The only good way of looking at it is it shows the chemo is doing its job, but the silly thing is knocking out the good cells as well as the bad.
I am sitting here waiting for ths District Nures to take my blood and flush the Hickman. I think they have forgotten me because the specimens are collected from my surgery at 11.30. I supose I had better ring them.
Looking out for you in the Dark Wood for the Steroid night time prowl.
Hope you poor veins recover. Tax is not supposed to hurt them as much as FEC.
Feeling bit down today, neuts 0.9, too low for chemo on friday. I have to go to hospital tomorrow and have another blood test, if they have gone up to at least 1.5 can have the chemo as planned, if not will have to be delayed by a week. But have been told in the meantime to start steroids today (8 per day for 3 days) just in case it can go ahead.
They had a job doing bloods yesterday, the one arm that can be used is now very bruised. Well moan over for the day.
Hope you are all ok with se's. Will post again tomorrow hopefully with better news.
Hope your Tax went ok today Kim and anyone else having things done in next few days.
Love Val xx
P S perhaps I should go into woods and request a few neuts from the jar!! Hav'nt ventured in there yet.
Good luck Tax ladies for today and tomorrow - remember, this too shall pass and can you remind me of that when I have mine a week on Friday!
Was reminded yesterday of how precious life is and how we should live every moment - a not very close friend of mine went to a dance competition in Blackpool at the weekend, was stepping on the floor for the final and had a massive heart attack. Luckily for her there were two paramedics competing who kept her alive and she is now in intensive care. She is 47 years old and fit as a fiddle. Makes you think doesn't it? At least we know our enemy and can gear ourselves up to fight the b*gger!
hi jiggy.i`am having 6 fecs.am day 15 post 4,number 5 next wk if bloods are ok on monday.hope you are coping with the s/e.like you iexpect just want iy all over with.mt biggest prob is the not sleeping.and now am getting hot flushes oh well the joys of being a woman!!!!!!!!!!
Just popping in to say good luck to Ducky with first TAX tomorrow. Hope it is an easier ride for you than it was for me! I am sure you will be okay - hope to see you in the woods soon.
Kim - hope all goes well tomorrow. Yes nurses in chemo unit thought hot water bottle was fantastic idea. Had my blood test today, rang the unit to check if all was OK for Friday and should I start steroids tomorrow, they said were a bit busy but would ring me back with results. They didn't ring me back so I am now having to wait until morning to find out, so hope I get through to them when they start at 9 so that I know what to do about steroids.
tigerpig - have ordered book from amazon.
mavis - yes steroid regime is completely different on Tax to FEC which was 3 a day, with tax it is 8 per day. Can't imagine what sleep pattern will be after that lot.
Will look in again tomorrow and let you know if neuts were ok and can go ahead with chemo on Friday, keeping everything crossed.
Hope you all get good nights sleep and not too many se's
Thinking about twinkle and hope she is doing ok.
Love val xx
Good luck to all of you having your first tax in the next couple of days.
I have felt absolutly fine since monday and went into work today for the afternoon and then helped take 24 boys for football training, wouldn't have thought that possible last week.
Basically I had the first 6 days awful after tax and then okay
All fingers and toes crossed for you tomorrow. A hottie is a superb idea it really does work. I always used one with patients who had small difficult veins-worked every time. Suck ice lollies if you can tomorrow plus the rest of the week and drink+++ you will be awake all night poor thing. Have you painted your little webbed toe nails? I keep looking at mine and can't imagine them in black or purple. I suppose purple will go with one of my wigs which was chosen by the grandchildren. Groovey Gran.
We will be waiting for your reports and hanging on every word.
Hope the ankle is healing.
So glad the ONC is pleased with you- or did you just flash your eyes at him? You sound very glam with your clipped hair and lippy. The steroid dose is higher and they are taken the day before , three days in total. I nearly forgot about them but lucky for me Ducky mentioned them. So sleeples nights and indigestion coming up!
Im really buzzing today as had to take 8 steriods today so may not sleep tonight and also 4 tomorrow morning before I go to hosp. At least they help with the tiredness.
May not post in till I get back as appointment is 9 am and have to leave at 8.15am to get there.
Val and Cackles all the very best for Friday. Val I am going to use the hot water bottle trick and put it on my arm on the way down in the car did your chemo nurse think it was a good idea?
xxxxx Ducky (Kim)
Hi all - hope all is going well for everybody. Good luck to those having 1st TAX this week.
I have FEC 4 next week - not looking forward to that but at least getting closer to the finish line! Then the radiotherapy starts!
Still feel really tired but last few days have felt more normal and
managed to do more. Appointment with oncologist today went well and he said I looked so well I was obviously coping with all the SEs I did tell him that a wig and make-up can hide anything!
Ducky-Good luck with 1st TAX tomorrow
Val,Cackles-Good luck friday
Will be waiting to hear what its like!!
Thanks Ruby for the scarf lesson,you look so glam in your picture,printed out intructions and stuck them on my mirror will have to have a go, hair loss continued so bit the bullet and had it clippered to a no 4, now a very butch granny,my hairdresser got quite emotional he never imagined his old teacher would submit to his clippers!!Good luck Ducky,Val and Cackles with next stage of the treatment,is the steroid dose different on FEC?
Saw ONC today and after next chemo may increase my dose to 100% cos I appear so well.OH keeps gazing at me in wonder at my clippered head cant wait to see the look on my grandchildrens face!!the look certainly needs the constant application of make-up,better find some earings allowed my pierced ears to close.Sorry for gabbling on ,feel a bit hyperactive today and dare i say Happy!!
You are here,and there is nothing to fear,Count your blessings,and before you,re finished counting you will have even more.
Slightly different routine for steriods with this TAX whole new things to get used to still three days of taking but shifted back a day. Well just get used to it and we will have finished!!!!!
Ruby and Heather and Tigerpig I too have pain in my lower ribs and shoulder blades. I have put my head in the sand and left it to the chemo. Having said that the pain is not constant so it might very well be the injections, muscular or the poor damaged nerve endings in my axilla sending out frightening pangs in revenge for their hurt!!!! I am becoming neurotic, but it is so comforting to know we all have similar symptoms.
I have tried the scarf tying. I got well knotted but the end result is a tatty version of yours. Many thanks.
Ducky you are a star, I had forgotten I needed the grotty steroids tomorrow. See you on the dark woods in the middle of the night! Think you need to take water in the JM if you continue this falling about!
Have a symptom free day everybody.
Just tried the head scarf tying sort of worked but scarf a bit thin and stubble sticks out throuh it so not quite the right look. Just need a better scarf more of a cotton one and think I will be o.k.
Did cover eyes first time which didn't help. Don't want to trip up again. Would never be able to explain it.
Hi ruby-I too have achey ribs,iam putting it down to those injections we have,Have spoken to BC nurse and she was not too concerned.So hoping its another SE to add to list.
I feel like a human today - yay!
I do however have a pain in my ribs under my mx side, i thought it was to do with the MX but now I am starting to wonder and worry... we never have normal aches and pains after bc do we?
Ok will attempt scarf tying instructions for those of you that want the slightly arabic scarf in my picture!
Take a very long scarf, preferably with fringes at both ends
Place on head with approx 15 inches on your left side and the rest hanging on the other side
Hold the left side in place and then wrap the other side round the back of your head, covering all baldy bits!
When you reach the left side go round again and twist it this time as you go to make a kind of a band
When you reach your left side again tie it in a double knot and adorn as you fancy - I bought some cheapy flower clips from headcovers.co.uk, only a quid or so each and makes it look pretty - and distracts from my puffy face and half eyebrows!
This makes a very secure headscarf and you can also put a sleepcap underneath it if its really chilly out!
Hope you dont all end up in knots!
Yes the cold or no cold is very strange. I had a cough after surgery in May and it lasted right up to July I was convinced the c**** had gone to my lungs had a CT scan in July and was told it was fine and all of a sudden within the next 2/3 days the cough just stopped. Nurse did say could be due to nerves/anxiety which I thought no chance but seems she was right. Think it would have cleared up much quacker if I hadn't gone overload with my brain.
Glad to see you posts are now getting through on a regular basis. Notice you have been in and out of the woods a bit I do have a tent in there and visit now and again. But i always seem to come back to the BWF gang.
Thanks for the recipe Ruby I do have a Nigella book and it is in there but I like the idea of sultanas instead of cranberries. This seems nice and simple without having to buy to much stuff.
I know i'm posting early cant believe its 7.30 here posts never have the right time on them. Hubby and son both up at 6.30 to go to work and never very quiet getting ready. Just taken first lot of steriods getting ready for tomorrow so not much chance of going back to sleep I guess.
Ducky- so glad the waddle is improving...... ouch sprained ankles can be worse than a break because they are not plastered. You are a star finding out about allergic reactions and the taxing "t". Isn't this have I or haven't I got a cold odd. My throat was and is slightly rough and I have been slightly breathless on exertion (not that I do that too much)and I have a slight cough or perhaps a "nervous" tickle / tight chest.
I think the evidence for not using anti perspirant is not very robust. Small numbers etc. The problem is that when the doubt is there it sticks. Even although I used to tell patients this I now just spray with non anti perspirant deodorant just in case. The problem is I can't feel where the wretched stuff is going because of the numbness.
Sivam- I coud do with you here to clipper my remaining three hairs. I keep wondering whether to keep them plus the looks of a ninety year old without Hairy Haggis, or build up courage to go to a strange hairdresser. My lovely lady moved after getting married. I hate looking so odd but I don't think I would suit a shave. Perhaps I am just self conscious. Perhaps friday's "T" will do it for me.
Rubythursday- Thanks for the link ....woopie....I can get rid of the apples. I need lessons from you on how to tie scarfs.
I have lots of tape all over my chest after a visit to the Lymphoedema Clinic. It will be wonderful if it works. ....what a sight for sore eyes I am. Bald head with a few hairs, bilateral mastetomy with angel wings, Hickman line and tape!!!!!ugh. Body Image...forget it. Nevermind my dear husband hasn't left home yet.
Side effect free night to all
Thanks Ruby will try that one a friend wants to make some for Christmas presents and we are going to give it ago.
I thought I had a cold last Friday had sore throat got a bit of a runny nose and then a bit of cough and then gone just like that I know what you mean very weird.
Down here in Somerset we say breakfast, dinner for lunchtime and tea for the evening meal so im with you on that one.
You could try this one and just use the cookers instead of the granny smiths, you would probably need to boil it a little longer as they would be a little more watery. I have done one very similar to this (I used sultanas instead of cranberries though) but I cant find the actual recipe for it!
The other thing you could do is make homemade apple sauce to go with pork, as long as you sterilise the jars and put enough sugar in it should keep indefinetely, or make some apple pies and freeze them uncooked maybe, or even dried apple done in the oven similar to sun dried tomatoes maybe?
We are having Butternut Macaroni Cheese with Wild Boar Salami for dinner tonight - children are looking at it with deep suspicion, however I am trying to economise so they can eat it or go hungry! You can tell I am a true southerner as up here in Boston they call it Tea not Dinner and Dinner is at lunchtime, I was so confused when I moved here!
Keep thinking I am getting a cold, runny nose, sneezing and then it goes - weird.
Still here and waddling. Been to hosp for blood results and neuts are at 1.32 today so much better than last time at .68 so green light for Thurday they should be even a little higher by then. Just had flue jab as neuts were o.k. Nurse looked at ankle and got doctor to look as well thinks it is just bruised and swollen. So they will have another look on Thursday for me.
Was told side effects with Tax more aches and pains which we know but may not feel so sick. Increased steriods so we don't get an allergic reaction to the TAX if we do it may be slight chest pain when Tax is being given and they will stop for a few minutes and give oxegyn and anti-hystemine.
My arm at the back down to the elbow is still a little numb was told this could be permanent or could take 6 months to come back. So will have to just wait and see. A friend from work has only just got feeling back over a year on from her surgery.
Ruby just wondered if you had a good Christmas Chutney recipe as you seem to be our Nigella on the web with the lovely food you cook. Have plenty of cooking apples on demand for free.
With the deodrant thing have not used a spray since surgery as not wanting to get it on scar. Have used roll on under other arm and baby powder under bad arm, have recently found some Simple deodrant roll on which I tried and it seemed fine as I always use Simple shower gel thought the deo may be o.k.
ducky I was told not to use spray deo but any other was ok,did think of buying the crystal rock kind or colloidal silver spray,hope your ankle soon mends
Val,my chemo centre is new state of the art building under the controversial PFI scheme heavily in debt etc in St Helens Merseyside,it is 15 mins drive away.The Welsh Hospitals only 50 miles away according to my ONC have an age 70 cut off point for chemo treatment.
Gutted cant access my wig till next week at the earliest!!
Love and Light Mavis
think the numbness in leg and stomach will be permanent - probaly because they cut some nerves when they cut me in half to find enough fat to make my new boob! ( I had loads of fat but I have massive boobs) It doesn't bother me much tbh but I do bump into things more as I seem to have lost spacial awareness of how big my hips/bum are!!!!
I have read all the stuff about deodorants and followed it all religiously first time round with bc - it still came back and I am much more relaxed about it now. Plus my underarm is still so swollen and full of extra boob (in case the surgeon needs it later apparently??!!!) that I cant get a roll on in. There is also at most shaky 'evidence' that deodorants cause any harm so thats for me personally one of the risks I am prepared to take. Its personal choice at the end of the day.
PS - no-one said a word at the hospital or onc about NOT using spray deodorant etc.
Keeps cutting out and posting before I have finished just wanted to say Ruby I was told under no circumstances to use spray deodorant. Is this a case of all hospitals having their own rules and ideas again
Don't know whats happening here cut out before I had finished posting.
Slinky - Yes am trying to have as much fun as I can on my good weeks. Not looking forward to this Friday 1st Tax, that is hoping little white soldiers are behaving when I have bloods on Thursday.
I then am not planning anything for a least a week just in case.
Ruby Is the numbness in stomach and leg permanent or just a temporary thing whilst having chemo? Runner bean pickle sounds delish.
Val-although no feeling havn't noticed it hurting more after chemo. Starting Tax this friday perhaps I will notice a difference then. Does anyone know is this numbness permanent or does it eventually go?
Cackles - I also notice the evenings are worse but better when I get up next morning. Could this possibly mean we are doing too much during day?
Mavis - were you told to use any deodorant, I was told only aluminium and paraben free ones. I use one from Holland & Barret.
About the hair I found it more distressing when I kept pulling out clumps of hair, than when I had it clippered. We are going back in time now I remember liberty bodices, hated them had to also wear brown stockings that clipped onto liberty bodice. If we are not careful will be starting a thread "down memory lane" ou say about cut off point for chemo 70 never heard that before, does it mean you are having to travelfor your chemo
Heather - will look out for that book, did you get it off internet?
Ducky - Are you OK havn't heard from you recently
I cant feel a thing under my arm, down to the elbow as well is numb. I also have a numb stomach and leg on my right side - although that is quite handy for injections and (in a few months maybe!!!) bikini waxes! I had Mx and recon from tummy in June 11
Makes putting spray deodorant on a bit hit and miss thats for sure!
Off to make some runner bean pickle now - gotta do something with them and its lovely with cheese - I have found some pasteurised camembert..happy days!
Hi mavis,i HAD A VERY SHORT HAIRCUT AND THEN I had my friend to clip it to num1 afterwards.... do not shave it , u might cut yourself and it is not advisable.... I was upset when my hair started to fall out, but it became really horrible as the hair were everywhere and cliping it was the best thing i did, but it is up to you..
Ducky , my dear hope you are ok,,poodle... lovely to hear you are having some fune time... hope all who are having white little soldiers count are feeling ok... xx
Val- Yea iam numb under my arm still too,feels like a band around my chest some days,seems worse now iam on chemo.
Had a day in bed yesterday felt so tired and yuk!My daughter down loaded a book to my kindle for me,its called "How i said Bah to cancer"BY Stephanine Butland.Ifound it a lovely book to read that i could relate to.I recommend this book to you other ladies to read.
Lovely sunny day here in shropshire,had a drive up to village and did a bit of shopping-Funny how one day can hardly get out of bed and the next iam out and about.
Made a lovely stew for tea with loads of fresh veg in,I know its not quite stew weather but soo fancy one.
Ducky-Hope ankle getting better.
Luv to you all Heather x
hello Val,I too have numb underarm mx aug,was told I could use deoderants a strange feeling when applying,am still having draining done on a regular basis,about every 10 days(200mls).Today day 14 after T+C,my hair has started to come out!!!phoned centre to enquire about collection of my wig alas my lovely wig man is away all this week!!!have scarves and hats at the ready.Can you give me your views? should I have a very short cut this week and then next week a clipper job?I have several ex students I can call on to perform the task,dont want to shave my head in case I cause some follicle damage.If I had a client in front of me I would take control(used to be volunteer hair at local hospice)Floundering around here:-)
Cackles as a war child liberty bodices ruled,rubber buttons through the mangle!
Tomorrow follow up with ONC who was a registrar in Flint, the cut off point there for chemo is 70,it is inly 50 miles away from here.
Morning poodlepatch I am numb under both arms which makes them feel swollen ( I had a bilateral mx)I hate washing them it is such a strange feeling. I splash water first grit my teeth and use a natural sponge. In the evenings the arm from the elbow up feels tight and numb. Ugh. I had an axillary clearance on the right and just three nodes on the left but both feel as bad when washing. At night I also get a sticky feeling......odd because. I use deodorant and when I feel the axillary is not damp. I was aware of the possibility of having nerve damage but did not realise it would be so strange.
I am off to the lymphoedema clinic today to have the swellings over my ribs under the scars assessed. No doubt it will mean a corset of some sort..... Back to liberty bodices (remember these?)
Hope everyone is tickety boo today
Hi Val (from another Val)
Yes I still have dead and numb under my arm, seems to be hurting more with the chemo.
Feel absolutly fine today, lots of energy, so obviously with the tax and me I am completly out of it for a week (longer than with the FEC), just ahve a very dry yucky mouth still and food tasting of cardboard or soap but I can cope with that
Not much going on hope this isn't a sign that you are all having bad se's.
Just a question from me this morning. I had my op and nodes removal end June. Under the arm where nodes were taken still feels numb and dead. Is this normal and is anyone else experiencing this?
Poor ducky as cackles says come and relax in my summerhouse you will be very welcome, might even bake you a cake. Hope you are feeling better and your bloods are ok this week. I'm having mine checked thursday ready,hopefully for first Tax on friday.
Had a lovely family meal out last night for sons 40th. He had a good night out with friends on saturday. He didn't need to tell me as I could see by the look of him when he walked into the restaurant and said he would just have a mineral water!!!! He apparently left his car at home and went on the bus so that he could drink. Unfortunately missed last bus home and had to sleep on couch at a friends.
Hope you all get good nights sleep and are not getting too many se's.
Good luck to everyone having treatment this week.
Poor Ducky - perhaps you could rest the ankle in Poddlepatches summerhouse!! I would love to join her there. It sounds so calm. Ruby Thursday do you give lessons in looking good in a headscarf , because you do. I am off to comb my few remaining hairs. There is more on my arms than head.
I have the relief of seeing the lympodeama nurse tomorrow. I so hope she can help with the fluid in the tissues of the rib area. No doubt it will be corsets and massage. Never mind I am of the generation that wore liberty bodices so nothing to fear!
I hope the theatre trip is ok this week Slinkey . Perhaps something like a a gas mask might be invented so those of us low in neuts can go out and about!!!
Keep chins up high girls the horrid yuk we are going through with chemo WILL soon be over. Then as you all say a meet up and big treats.
Sitting here with a lovely breeze on my bald head.
Day 7 after tax and feel a lot better even yesterday, aches and pains have eased, finger tips still very sore, eyebrows and eyelashes getting less by the day and mouth still very dry and yucky. Stomach seems to be playing up though now and taste is still dreadful.
Didn't get much sleep last night should have joined the rest of you for a party
Going into work this afternoon for a 2 hour course, I can already predict the comments I'm going to get:
You look so well (I don't feel it though)
Lucky you being at home in this lovely weather (I'd rather have my life back and be in work like the rest of you than feeling c*** all the time)
Bet you've spent the last week in the garden in the sun reading (no as I'm not allowed in the sun because i've got so many drugs in my body and the sun actually makes everything feel worse)
Calm down and don't get wound up before I even get to see them!!
Time to go and tackle the ironing and other jobs that have just sat there for the last week or I could go and read the paper with a cup of tea in theh garden
Have a lovely day all before it starts to cool down (can't wait for that)
Waddling like a real duck now. Very swollen and also very bruised. Off for blood test this morning so will show it to nurse and see if she thinks I need to go to local hosp for Xray. Hoping nothing is broken am able to walk on it better today though. Yesterday had to go up the stairs on my tail feathers!!!!!
How horrible to have all those side effects tiger pig- hot flushes are the pits in this weather especially with a wig.
I swallowed my pride yesterday and played Croquet ( sound posh but just twelve good friends banging balls through hoops and cheating++) with a headscarf. Not good for my image .I looked like the ladies in Coronation Street in the 50 s. Why do the models look so good with tied turbans scarfs and bandanas? It must be the shape of my head! URG. Back to Hairy Haggis today.
I can't help thinking of Twinkle and her clots. I so felt for her when she had problems with her line because I too had a traumatic time, but least said - the majority of insertions are so quick and easy. I do so hoe she gets home soon to her lovely young daughter and the rest of her children and partner.
Just like a Duck how are you waddling with that ankle?
Twinkle and Kinsee how are the side effects today? it is wonderful having the"I felt like that" reasurance.
I suppose I better Get Up. Played in the "dark wood"last night.
Mavis-Thanks for site-food for breast cancer-Have just printed me
off a copy x
Put me down for some donkey dung!! LOL
My oncology nurse recommended i try Reiki,so have booked for a session a week today,will let you know how i get on.
Morning ladies,Started to feel better then last night felt so ill.Stomach crowling like a bear,feeling sick,headache and bottom of my feet on fire?!!Hot flushes.Thought i had gone through the menopause last year,but oh no,its here again!! Lucky me!!
My sense of smell has hightened again,food just smells yuk!
I see a few of you are off for TAX later this week-Good luck-Keep posting-Hope TAX SEs are better.
I know we are all going through the same-such a comfort having you all out there.
Loads a luv Heather x
Cackles,thanks for the blessing. A miracle in this Avenue,I slept from 11.30 to 5.30am,perhaps it was the fungi i tried in that dark,dark wood any way certainly am "high" at the moment,at least on this forum i can shout about it without appearing a nutter who has slept for 6 hours!!!Given a book by a Reiki friend called the Healing Code,read it carefully with some scepticism did the codes,now wondering was it that? or was I just plain exhausted.At the moment if there was anectodotal avidence that rubbing "donkey dung" on my head would be a cancer cure I would buy some:):)