You must be so excited about plans for life after chemo - keep looking forward to them.
Sorry I haven't been in touch - don't know where time's gone with one thing and another. Plus P's mum has been in hospital for the last 2 weeks and we are waiting for social services to sort out extra care before she can be discharged. I'm escaping off to Rome next Mon with Mum for a few days and then am back into oncology on Mon 6th Dec for my drip and the 9th to see onc (registrar probably) but don't think these will coincide with any of your visits. The following week I'm off to my sister's in London for an early Xmas, back on 20th.
If you're up to it and fancy meeting for a brew sometime, text me! That goes for any of you local girls.
Hope everyone is keeping as well as possible. Enjoy the films Maggie!
3rd FEC today can't believe half way. Know going to be grotty all week so have planned to hibernate with lots of films etc sky+.
Got engaged on top of Beacon fell on friday lovely clear day came as total surprise. Plan on selling both houses and moving to Garstang in the future. So there is light at the end of the BC tunnel !!!!
Im in Lancaster this weekend,is anyone around to meet for a coffee or glass of wine?I am coming up Thursday night and so could meet Friday during the day.
Would be lovely to meet some of you
Glad you had good holiday change of scenery does you good, shame about the weather.
Will arrange line flush Monday 8th around 2pm then we will make plans for lunch. 2nd FEC 1:30 tomorrow another one bites the dust. Will mail or text you soon.
Love M x
Glad you aren't feeling too bad with the chemo. My hair came out 2 weeks after my first chemo and it came out in about 3 days!! I just wore woolly hats.
Holiday was good, although the weather was v poor the first week. It picked up a lot the second week. Did nothing at all apart from a bit of shopping (whoops!!!) and reading. Grand!!
It would be good to meet again say for lunch very soon. Ring or text me and we'll try and fit a date in amongst our other social events (I do include hospital visits in that....). I've been sorting a few bits of stuff out this week and haven't caught up with anyone yet. Couple of things on next week but have drip again Mon 8th at 2pm so if you're up to it, that may be a day worth aiming for. See what you think. Anyone else is welcome too.
Hope you had a good holiday. I would love to meet up again enjoyed last time. Chemo going ok ready for next one next Monday. Saw Onc last Friday said felt bit of fraud two weeks in no major side effects. Spoke too soon later that day developed mouth ulcer then started feeling achey by weekend thought I had flu but no temp. Stayed in bed took paracetamol by Monday felt great again.( Oh forgot to say hair started coming out Saturday so shaved it off rather than look lime baby monkey)
Had little paddy yesterday hate the wig decided to wear hats instead.
Loving being off work one of my work mates taking me to Glasson dock for lunch today. How did I ever find time to work!!!!!!!!
BC has advantages I always find bright side of every thing.
See you soon love Maggie x
Just thought I would bump this up to see how you are all doing as I'm back from my hols.
Maggie - hope the chemo is bearable and you are coping with it without too many side effects.
Sharon - how are you? Sorry you couldn't make our little get together the other week and hope you are feeling a bit better now.
Anyone fancy meeting up again before too long?
I am back on dry land after a week on the Leeds Liverpool canal with 2 pensioners and my OH plus 3 dogs. Had a nice relaxing break drinking wine reading and generally for filling my duties as galley maid. Now ready for the Journey to come. Will be going into work for 10 monday to have brew with my friend before PICC at 10:30am. Have also got to have a Cardiac echo at 14:10. From reading other posts looks like it will be some time before work is work again !! Strange feeling better physically ( will be 5 weeks post op) and enjoying good long walks again but once every thing kicks off so to speak looking like I will be feeling far worse until I get back to normal again.
looking forward to meeting you both will PM you my mobile number in case PICC takes longer than I thought other wise will meet at 12noon if that's ok with you all.
Shame you are busy on Monday. never mind, I'm sure you'd be welcome to join us when we get together again - hope I'm not being too presumptuous and spekaing for the others too freely here!! Keep an eye on the thread.
I am always in Lancaster and funny to read that you are going to the Water Witch as after my first chemo last year 25th June about a week later i was staying at my brothers for the night who lives in Hest Bank and my temp went up and i ended up in Lancaster Royal.After 2 nights due to severe neutropenia my brother walked me slowly to this pub for some chips!!!I live in Wigan but spent alot of my time in Lancaster while on chemo which finished Dec 2009. I would have joined you for lunch on the 4th but i have lectures that day.I have just started back on my nursing diploma at Manchester uni.
Maybe we could meet up another time as it would be nice to know some people there who are going through what i just recently went through.
I am 37 and currently waiting to see when i can have reconstruction.
Hope you have a lovely lunch anyway
Good news about the blood count going up Sharon - perhaps not as quickly as you would like but at least it's the right direction! The chemo takes a long time to get out of your system - took me a long time and when I was last in saying I get tired easily, Mr P's registrar said it's a combination of all the treatment I've had and am having and it's only to be expected. Dr S and her reg said the same and I know it's right but I still feel a wimp! Mum did a coffee morning and afternoon for Macmillan yesterday and I helped her all day and also setting up for about 3 hours on Thurs. Last night I was soooo shattered I went to bed at 7pm, dozed loads during the evening and woke up at 7am. Normally up 3 times in the night, so I must have been wacked. Raised a lot of money though.
I also tried to go on the acupuncture trial a couple of years ago. Apparently they've had great results and no-one has ever been put in the control (ie no acupuncture) group... til me. Hey-ho.
Getting all your surgery done by Xmas would be good. I was never offered reconstruction but wouldn't have had it anyway. Never been offered mx on other side either in spite of large family history. I had bad side effects from tamoxifen but they're the same on the new drugs. Lesser orf 2 evils I suppose.
On the subject of hair, I agree with your attitude and that was the way of looking at it. Went to a friend's wedding do when my hair had the finest of coverings and although I had a few looks that was from people who didn't know me and I think they were a bit shocked. All the people there who knew me were just delighted to see me out. One friend I hadn't seen in ages & ages, just said how good I looked and that I was still the same person they knew which was very sweet.
My OH is having heart problems still so we're off to the hospital with him this time for an x-ray on Mon and ultrasound on Tues. It never ends - car knows it's own way up there!!!
Maggie, have a fab break if you read this before you go away.
Looking forward to the 4th.
Maggie, the wig looks great.
I also had too wigs, 1 cheaper, and 1 monofilament bob, with highlites in it, got them from the wig stuio in preston. They cost me a fortune. But I just didnt get on with them at all. I think mainy because chemo put me into the menopause, so i have had non stop hot flushes and sweats. So wearing a wig made me hotter still. I have a hat that i used to wear out, but didnt bother in the house.
I have a fine covering of hair now, so i go out without anything on my head. I doesnt bother me, if it bothers anyone else thats there problem.
just a quick update, i went back to the drs, my white cell coint is going up slowly, but its going in the right direction, so thats good.
I told him about my severe pains in my knees, hips and heals, and that i had a funny feeling in my head. He seems to think its the tamoxifem, and that i am experiencing bad side effects from it.
He told me to stop taking it for a week, and see if i feel any better. If i do then we will have to look at an alternative.
I was abit worried about stopping it, so phoned sb my bcn, for her advice. She seems to think that the fuzzy head will be the tamoxifem, but my other aches and pains will still be the chemo.
I am finding it hard to get my head round this as its 7 weeks still my last treatment. But she said i have to allow atleast 6 months from last treatment to be back to anything like pre bc old self.
Anyway sb has referred me to physio, and to go for the new antifatigue trial, which is acupuncture based, she said that they have had very good results so far, so i'll give it ago, nothing to lose anyway. She is also going to bring forward my appt to see mr p, to arrange the op to finish my reconstruction, and discuss whats happening with the other side. I will def have it done before christmas she said. So yippee!!
I have asked my friend Barbara to come along on the 4th, she got her 5 yr all clear last year.
Anyway, hope your all doing ok.
Just had a look at the wig in question - very nice! Get you with the exotic colours....I never had a wig as I was off work and it was winter so I wore a beanie-type hat when I went out but didn't bother in the house. Losing my hair never upset me as I worked on the basis that the chemo must be in my body but it was soooo exciting to see what it came back like and how quickly. Family & friends were also excited when I saw them and a friend I saw once a week said she could almost see it growing. That's a nice bit of all of this.
Look forward to the 4th xxxx
Oooh just seen your pic - at least we will hopefully spot each other!!
Putting 4th as definate date in my Diary will need something to look forward to after PICC insertion. Had lunch in WW last saturday and it was very nice.
Yesterday went to get wig in Blackpool partner and two friends came with me. Thought it would be fun but I was quite traumatised. Have fine hair which is light blond and i usually have it short and spiky so everything I tried on felt like I had a Beefeater helmet on. Am not vain but shocked myself how I reacted. However, after 2 hours ended up with two. A free short blond bob which looks like an hairstyle I had 10 years ago, plus a flicky spiky one complete different colour ( raisin glaze) brown with plumy highlights. (Have been known to have pink and purple highlights before) Typical of me picked an expensive one monofilament but what the hell bonus is dont have to pay VAT if you have BC. If you look on alternative look website Blackpool spiky wig called Tia see what you think. Picking them up week I come back from hols . .
Look forward to meeting you both.
Get me after an hour managed to post a pic!!!!!!!!!!!!
Love Maggie xx
Glad you can make it too Sharon - it will be good to put faces to names in the flesh so to speak!
Sorry your bloods are still low and they need more. It's horrible waiting for results and then even more frustrating when they're not conclusive.
I so sympathise with the hot flushes as they've been the bane of my life since I started tamoxifen and then arimidex. They have been much worse the last couple of weeks too and a couple of other ladies I have spoken to at my class at Slynedales have said the same. As I'm still not menopausal, I have to have zoladex jabs monthly to supress my ovaries and they give hot flushes too. Oh well, the colder weather is forecast for later in the week! I'm fortunate in that I don't get headaches or nausea but I know others do on tamoxifen. They can always swop you from tamoxifen to something else if need be.
Will wait to hear how you get on.
Enjoy your hols Maggie!
Hi Ladies, Hope your both well.
The 4th is fine with me. Look forward to it.
I got my blood results, my white blood cell count is still very low, 0.7 so i'm moderatly neutrapenic. So i have to stay away from bugs.
I have had to go and have more blood taken again today.
The dr doesnt know if it still hasnt recovered from chemo, or if its something else. He did say that both tamoxifem and gabapentin, which i take both,can lower white blood cells, but its a rare side effect in both.
So have to wait and see what these next tests show.
I have had a bad headache, and slight nausea, for the past 4 days, and the hot flushes are back with a vengance.
The blood tests also showed i am in the menopause.
Anyway will let you know how i get on.
It's on the calendar !! It will be nice to have a good lunch, a good few laughs (I hope) and compare experiences etc with others locally. There is another local lady I know and I'll see if she's up for it but it will depend on her treatment etc.
Why don't we meet for lunch the 4th Oct. Having PICC line put in 10:30 that day could meet 12ish Water Witch. Will PM you both before then exchange mob numbers.
Got another recruit for our forum just been with her to Nuclear Med for isotope injection. She's having op tomorrow in Kendal. This BC getting very common!!!!!!!!!
Count me in for a lunch meet-up ! I can do the 4th, 5th or 7th that week, then at hospital for drip on 8th @1pm but could always ask them to move it to fit in with our plans !!! The nurses would approve. I'm off for 2 weeks hols after that.
Maggie - hope you have a wonderful break and try not to worry too much about the treatment to come while you're away. Use it as a chance to rest and build yourself up.
Sharon - hope the doctor has phoned with blood results that are good.
Look forward to meeting you both xx
Hi Maggie, hope you have a wonderful holiday, you deserve it.
I'd love to meet up, anytime is ok with me, as i'm not back at work yet. Get in touch when your back, and we can arrange something.
Takecare Sharon x
Hi Liz Sharon
Off on holiday next week when i get back would love to meet up with you both. May be Water Witch one lunch time week of the 4th Oct?
Or any place really.
Glad to hear you got on ok Maggie and feel a bit better now things are happening. My veins just held out for all the chemo so I didn't need a line and I was fortunate in that I didn't feel sick. Get some of those anti-sickness wristbands from Boots or Superdrug - I'm convinced they helped. Otherwise, yes I got tired as it went along but that's only to be expected. My memory and concentration went completely and are still rubbish but it can be a good excuse at times !!! I did get heartburn and acid reflux during chemo, which is something I've never had before and I still get it now although my current drip also aggravates it. Try and take things as they come and only do what you can. I never bothered with a wig and just wore a beanie type hat when I went out - I didn't care!!
Sharon - I started off on tamoxifen for about 7 months but the side effects were so bad I was swopped to arimidex. As I'm not menopausal I have to have a zoladex injection each month to surpress my ovaries so I can have the arimidex. Hope the blood test results come back ok. I'd always rather have them test stuff to be on the safe side.
Well, my appointment went well today. I didn't see Dr S but saw a Dr T who I had seen 3 years ago during chemo and then rads. She was lovely and remembered me. Said everything seems to be stable and my bloods are fine, as do all my glands, lungs, scar area etc. I can stay on the prozac to help keep me calmer and cooler (been soooo hot this week) indefinitely so at least I won't kill anyone in the forseeable future!! Back again in 3 months and stay on the same drugs so all was good! Hope this gives you both some positive vibes.
If you fancy a brew/meet for a chat at any time, just shout and I'll slap it on the calendar.
liz, i have seen dr s, shes lovely, i see her because i am on the supremo trial radiotherapy. I will be followed up for the next 10 years, through the trial, so will see dr s. annually.
I went to the gp on tuesday, to see if he could help me out with the hot flushes, and the joint pains. He has prescribed me gabapentin, its for neuropathic pain, and it can also help with hot flushes, so if i can kill 2 birds with 1 stone, i'll be chuffed to bits. I also had a load of blood taken for various tests, dr is going to fone me on monday with results. I think they are just to reasure me that there isnt anything going on, that shouldnt be. But it only human nature to worry at the slightest ache and pain.
Can i ask you do you take tamoxifem? if so, how do you get on with it. I have only been on it a month, i'm sure thats whats causing me all this pain.
Hope to hear from you soon
HI Maggie, i'm glad your feeling alittle more in control, now you have your treatment plan. I had to have a hickman line, as they couldnt get a pic line in. It wasnt a problem though, so dont get too stressed if the pic doesnt work.
As for the chemo, with the fec, i was very sickly on the first cycle, but i had emmend anti sickness tablets for no.2 and 3, and wasnt sick at all. So keep that in mind if you are sickly with no.1. I found that the last thing i ate before chemo, i couldnt stomach again for some time. So dont eat your favourite things before chemo. i would just have food little and often after chemo. I took 2 bottles of water with me, and some sweets to suck during chemo.
Just really take it easy afterwards, dont try and fight, what your body is telling you to do. I found that sleeping is a great healer. It is difficult to sleep whilst you are taking the steroids, but i just used to doze.
Take care and lots of luck for minimal side effects.
Hi sharon Liz
Oncology appt went well took my Partner and two friends in with me. will be having FEC-T PICC line in 4th Oct have a Ruby wedding doo in Cheshire Sunday 10th so arranged to start first Cycle 11th Oct.
Was more nervous going to see Oncologist than when I had Op. Think more so as I work at RLI all the girls know me the older staff very well as we have worked together in the past. So for me its like going to work will have to get used to being on the other side of the fence.
Booked appointment with wig specialist in Blackpool for next week fancy something funky new image. Actually the hair loss does not really bother me so much as the other side effects. Friend took me to Mataland this morning and we got a bucket with a lid on prepared for all eventualites.
Also got an academic wall planner so I can look at appointments tick them off as treatment progresses. Sharon's right I do feel more in control now I have a treatment plan.
Any tips girls ?
Thanks for the good wishes for Thurs. I'm under Dr S - she only goes once a week from what I understand as she does a lot of the rads planning at Preston. She saw me for every appointment during chemo and a few afterwards but now I usually see the registrar as I've no issues (well, not that I'm aware of !!!). I don't get myself in a state before an appointment but do have to write down questions as chemo brain is still having an effect on me - often then forget to take my piece of paper with me !!!!! Hey-ho, worse things happen.
Maggie - hope you go on ok this week and like Sharon says, once the news has sunk in a bit more and you have a treatment plan in place, you will feel more in control and a bit better - honest!!
I'm off to sit in the sun for a bit while it's out. We have a van we can sit in (don't ask...) out of the wind that's still blowing an absolute gale down here by the sea. Better than that rain though.
Take care both of you and be in touch again very soon x
Hi Maggie and liz,
Liz hope you go on ok at your appt on thurs, do you see dr f?
Maggie, hope your feeling a little bit calmer now, you have had time for your news about chemo to sink in. Once you get your dates and get going with treatment, the time soon goes. Good luck with your onc appointment, and hope that you dont have to wait too long.
Let me know how your getting on.
I'm in to see oncologist next Thurs for 3 month check-up but will probably see the registrar as basically I'm ok with no major issues. I have a different onc though.
The chemo is do-able. I had big doses of it (4 x EC then 4 x paclitaxel/gem)and apart from ending up in hospital with an infection after the first one, I was realtively fine from then on. Yes I got more and more tired as treatment went on and all my hair fell out after 2 weeks but that's more than grown back. They gave me a neulasta injection after each chemo dose from the second one onwards and my bloods stayed ok for no further delays. I also wore those seabands they use for travel sickness the whole time 24/7 and never felt sick once - may have been psychsomatic but who cares??? I know it's daunting to face up to the chemo but the nurses are all so lovely and friendly and I never once felt frightened. Try to go with the flow as they say!
Good luck and will wait for an update! Oh am about to change my profile piccy so if you see me around the unit, say hello and I won't think you're mad - honest. The same goes for anyone else in the area.
Thanks Liz & sharon
Had Mr P and will be seeing same oncologist next week. Good to know I am not alone. Very apprehensive re the chemo will keep you posted after I have seen Dr E.
I'm in sunny Morecambe but a lot further down the line than both of you as I'm 3 yrs since diagnosis and chemo. Apart from one lady I'm in touch with, I've felt like the only one, even though I'm obviously not!!! (sadly..)
If I can be of any help at all - had chemo x 8, then mx and anc (Mr P did a fab job and scar is always admired) and then rads - please just shout. Send me a pm and perhaps we could arrange a meet-up ???
I've had great treatment from the surgeon and the oncology nurses and have always felt like I've been in safe hands. Unfortunately I have secondaries in my bones that were there from the start but am not letting it stop me!! Am in oncology tomorrow lunchtime for a drip I have monthly.
Hope to be in touch with you both.
i finished my chemo 5 weeks ago, i went to lri, i am under dr e, he is a lovely man. All the nurses at the mac unit are absolutelt brilliant. I had the fec-t chemo. I had a mast and node clearance in feb, at at Kendal. I am half way through my radiotherapy.
My surgeon is Mr P, and S is my bcn.
I am due to have my reconstruction finished in nov.
chemo is pretty rough, and i had a worse time, than most, was admitted 5 out of 6 treatments, because of white bloods being low. But I'm out the other side, and here to tell the tale.
I'm sure you will be fine, and you will be looked after by the best drs and nurses that there are around.
If You want any info about anything at all, dont hesitate to message me.
I had bad news yesterday that I wil need six months of chemo. My surgery WLI mammoplasty was two weeks ago today. Saw Consultant yesterday apparently the tumour twice the size originally thought so instead of just radiotherapy will now need chemo then radio. Feel like I have been kicked sideways as my eternal optimisim has let me down. Very apprehensive of chemo but obviously will see this journey to completion. Any tips advice would be appreciated.