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.
Maggie
Hi Maggie,
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.
Sharon.
Hi ladies,
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.
Liz x
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.
Maggie x
Maggie,
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.
Liz 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.
Sharon x
Hi Sharon,
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 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 ?
Maggie x
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.
Sharon x
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
Sharon x
Sharon x
Hi ladies,
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 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.
Maggie 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 girls,
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 Girls
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!!!
Maggie x
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.
Liz xx
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.
Sharon
Hi,
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!
Liz x
Hi All
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
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!!