Hi, Just an update on my earlier post on this thread regarding Aceytil L-Carnitine & Alpha Lipoic Acid supplements. I saw my surgeon for a follow up appointment today and she confirmed that they can be taken alongside Tamoxifen. Hope this proves helpful to others!
Just to add to what the others have said....
I have the same scar as you and no nipple. Such a shock at the start I know.
Listen to the advice from your medical team and accept that you will feel bad for a few weeks.
I tried to get out during the day as soon as I was able to face it. It did me good to be out in the outside world and realise that I would be returning to my life. Pace yourself and try not to worry. You will get better.
This is a routine operation and it is happenning every day. My anaesthetist told me that before the op and I felt a wave of relief come over me. It was just what I needed to hear.
Be good to yourself.
Oh bless you xx I have done that before, and found out to my cost that it was not a wise thing to do, hopefully you have taken some now and will be able to catch up on your sleep.
As far as I know they have just done a lumpectomy with nodes, not mastectomy thats why it was a shock to see how long the scars are. I had a really bad painfull night last night, I wanted to sleep pain said otherwise this morning I feel like I have been run over by a bus. I only have myself to blame for the horrendous pain, I had no painkillers at all yesterday to give organs a rest, very bad mistake.
Saphire - how lovely on your card. Yerrrrrrrr, nice.
I'm presuming you've just had a mastectomy, from the sounds of it?? I had two, and recovered really well from both, in the healing respect. But, yeh, remember it's huge, massive surgery for your body to undergo. Plus, as Lady H Bowler said, takes a while to just recover from the general anaesthetic effects on your body. You' ll feel so much better in the next week, but please DO your exercises - religiously!! At least 3-4 x a day. Honestly can't tell ya how much difference they make. Also, keep a watch out for a seroma developing. Despite having drains, I developed a seroma with both. Had to have my first mast drained twice - isn't unusual. But important, if you do develop, to get back to your ward doctor and have drained, as they can prevent/slow the healing if you leave them.
Not nice to see, scars and nothing, ref no nipple, is it. Huge shock. I'm so sorry you've had to have it done. But sounds like you still have a remaining boob of your own?, which actually makes a huge difference. I know, only too well.
Much love to you
Thank you Runningmum, ladybowler.
Yes after reading this thread I realise I am not being silly its normal to feel like this, on an up note I had a beautiful card delivered today signed by 50+ friends wishing me well it was very comforting.
Just to echo LadyB's reply, it's early days at the moment so just listen to your body and rest, relax and sleep when you feel the need. Remember to be kind to yourself. This will help you with your follow up treatment too.
Love & light
Remember you are only a week after major surgery mate, you will still be feeling the effects of the anaesthetic as well. I tihink it is always scary when you first look at your scars, but they will settle down and in the coming weeks they will be less red and swollen
Sending you a hug xxxx
I Just found this thread and read through it all. Its been a week today I had surgery 13/4/17 results on rest of treatment is next week 28th. I thought it was just me being being silly feeling the way I do, I am just so tired I want to sleep all the time. I thought I should be feeling much better by now apart from being sore after surgery, reading through this thread I dont feel guilty anymore and need to prepare myself for whats to come.
I think I feel worse today because my dressings finally came off in the shower and must admit it was a shock to see how large the incisions are, No nipple and a five inch cut across breast and a 3 inch one underarm not what I expected.
Thank you for the thread
Hugs to all
Didn't contact the doc, thought I'd wait for my follow-up appointment at the hospital next week and ask then. Will let you know what they say, though. Cheers!
Did you get an aswer from your doc? As they are natural and not oestrogen related, I'd have thought they'd be okay for you to try
Hi, I've been looking into the Acetyl Carnitine & Alpha Lipoic Acid supplements that have been suggested on this thread, and wondered if anyone knows if they are ok to take while taking Tamoxifen? I'd really like to give them a go to see if they improve my energy levels, but am cautious about taking anything while on Tamoxifen. Will probably call my GP next week, but figured if anyone on here knows the answer it'll save me a bit of time and I can order them more quickly! Thanks in advance!
You too Anne. Hope these supplements help and you get rid of them there nasty back leg pains.
Love to you and all others lookin in.
I have just ordered those supplements so thanks to Blueash and Delly for their suggestions!
I am getting my 5th Herceptin tomorrow (and just finished chemo before the 4th one). I have been verrrry tired and bad achy legs has been the worst side effect. I feel as though I did a marathon 2 days ago. I used to run a lot so I know the sore legs feeling! But it never goes away like it would 3 days after a long run. As usual the onc doc doesnt want to know and wouldnt agree to reduce the Herceptin dose. Just advised paracetamol.
So am going to grin and bear it tomorrow and hope this next 3 weeks might be a wee bit easier on me.
Be good to yourselves ladies!
Hope you're all doing well and bursting with energy? !!!
Blueash - you might find these suppliers a better/cheaper alternative to those of yours. Also, you can buy larger quantities of 120 x 250mg(Acetyl L Carn)/200mg(Alpha Lipic Acid combination. With the added advantage that they're supplied in "letterbox friendly" containers - removing the need to be at home for, or missing deliveries and having to pick up from the postal depot - www.health4all-uk.co.uk.
Hope that's helpful.
Also, I introduced these tabs to a good friend of mine, who's suffered with M.E. for years. The results for her have been quite astounding !! She's bouncing around like a Spring lamb, and not suffered any relapses or flare ups since starting them.
Lotsa love to everybody here
I gather that chemo seriously depletes your resources of carnatine and that animal protein (meat, cheese etc) is the main source. Some of us might be heeding advice to have a more vegetable based diet - I know I was hence we are not replacing our lost stores which is why we feel so ill.
I bought these from Amazon and take one tablet twice a day:
After a couple of weeks on them I feel great.
I have been following the advice of a poster on here and taking some supplements. After just two weeks I do feel a great deal better. The poster was takeadeepbreath and this is what she posted:
Most cancer patients are deficient in L carnitine and the research listed below all say that supplementation reduces fatigue – and improves mood.
The conclusion said “Most of the patients who received l-carnitine experienced improved fatigue, mood, and sleep.”
First of all thank you. I was beginning to think that I was going mad. I was diagnosed in Jan 2015, had chemo and surgery in August 2015, with 3 weeks of rads in Oct, 2015 and then three weekly Herceptin until May 2016. I went back to work in Oct 2015 and had a pretty good year- sure I was tired but overall did ok. Now, since September, 2016 I seem to be permanantly exhausted, catch any sniff of a germ and at the moment am feeling nauseus and dizzy. GP says 'vertigo', though I had this in Sept- more tablets but surely this doesn't address the cause. I feel so frustrated and like the GP isn't really hearing me- or that I have turned into some sort of raving hyperchondriac... Is there anyone else out there with similar??? If this is me post cancer...well, it just isn't me! I thought i had it, dealt with it and then my merry little life would continue??? Any advice?
My nemisis is also the fatigue aches and pains/flu like symptoms and have recently discovered the idea of trigger point pilates following a visit to a physio and it's really helping and wanted to share. It's basically self massage using balls and rollers to apply pressure. There are lots of videos online to get the idea, but swap the knobbly rollers and balls for smooth ones to reduce the intensity so it's not painful and you're well away. I use a childs rubber ball and focus on my thighs and bum. Simply lying length ways on the roller with it running down your spine is glorious. It releases tension in the neck, shoulders and chest without straining.
It's making a huge difference, I'm not waking up in as much pain and I'm finding it easier to move around. It'd be great if I could afford a regular massage, but this is a close second, I can do it whenever and makes me feel like I'm doing somthing to help myself to recover. Definiately worth a look.
Best wishes x
Hey again Dizzy,
I believe "Maggie" did too. Yes Thatcher!! But I don't wanna get into a political debate. Dizzy - You keep romancing with your romance woman. Long may it continue. Must be serious to take/make such a massive geographical move. Whoohoo for you darlin.
Good on yer Scarf Lady - and a warm WELCOME.
I'd like to know WHO owns this MILL?? It needs some serious work and alterations - don't ya think !!
Hope you're all doing okay
So good reading all your replies. It makes me feel less of a wimp. I think we all expect too much of ourselves. I certainly did. Finished treatment in March this year and expected to be back to usual activities and routines. I am not! Just driven 2 and a half hours back from the coast and I am shattered! Managed a morning walk (3miles) but that is all I did. We must not expect too much of ourselves EVER. We've all been through the mill!
Well, my goodness,
Look at all you amazing women coming together here, for group therapy, cos that's basically what it is, and what this Forum's all about. And why it's so dear to my heart.. Has helped "pull me up" many a time.
Doesn't it make such a huge difference to chat to people who DO KNOW, have directly experienced and ARE experiencing what you are. I know it's through the ether and not quite the same as face to face contact, but it still and CAN all help.
I'm often saying, I truely take my hat off to you chemo-ers. Facing and dealing with just the Diagnosis and surgery is difficult enough, without your body being bombarded by powerfully strong drugs and radiation.
WE keep talking about the "NORMAL YOU", and those around us who haven't experienced BC keep talking about the "NORMAL YOU". The truth to me is - after what we've experienced, we're not ever likely to get or go back to what we used to consider "normal" for ourselves.
I think we have to learn to accept that we have a NEW and DIFFERENT "normal" than we USED to HAVE. Do you think.
Jane - I made a point of reading "The Spoon Theory" - excellent stuff. Plus, I felt very sorry for the girl who wrote it.
Keep kicking lovely ladies
Yep, i know where your coming form kellyjo71, I'm tired achey and irratable not to mention no patience even after a simple food shopping trip. I have to take my car now ( used to go in a friends car) as i have to cut it short most of the time to come home because of the aches. I'm a house wife with children at home, 19yr old triplets and a 14 yr old. They do help a lot but i have no energy what so ever. And yep i'm now 42 but feel 82. My breast care nurse said the aches could take up to a year to go (it's almost that now) but no sign of them getting better yet. Simple things like light housework with tire me out and then after i stop bad knees ankles and sometimes wrists. I also put on a face for ppl as they expect me to be fine now, and it's too much trouble to try and explain to them that i'm not really fine. Have you got close family that can help you out? And your definatley not alone either.
Jackie - Oooomph, me and a WHOLE loada peeps are THERE with you darlin.
Have a look at MORE sections/threads on here. A good one being "Just Diag and wanting to talk to people who understand". Says it ALL in the title.
WHAT was your SCARE 3 weeks ago?? Did you find a lump or change??
AND what it is you have "NO Patience with"?? Is it that you get niggly at other peoples complaints?, when you have been through a massive, major life threatening disease? and wish other people would be grateful that they haven't etc.etc.????
Talk to us Jackie. Be more specific.You're in a place where you can FREELY VENT darlin. So LET RIP if you wanna.
I think you'd be very surprised at how much help, sympathy, EMpathy and understanding you will receive from we "fellow women" here. None judgemental too - cos this disease/experience throws up all sorts of stuff that can cause you to behave in all sorts of ways that you may NOT have done prior to it. E.G. - 'I' too find myself less tolerant of certain things or certain peoples behaviour.
I so "GET" that YOU thought YOU'D get back to normal. Forget that and espesh what ANYONE else thought/hoped. They're NOT YOU and haven't been through what YOU have. Right now, you need to relate to OTHERS WHO HAVE. Girl, are you in the right place. Give it some time posting on here. I'm totally SURE/KNOW!!!! it'll be of help to you.
Do you have a partner/husband/wife in all this? Or are you on your ownio? I can totally "get" you feel "out of place". If there is no-one else in your life that has been through what YOU have, you're bound to. Therefore, you have no-one to relate to, and that can be a very LONELY place. UNDERSTOOD here.
A good, positive move you've made for yourself - just putting a post on here. We're HERE for you. Keep posting, keep us in touch with how you're doing. We WANT to know, and will try to help in ANY poss way we can.
Have I convinced you?? Get typing woman. Give us all you've got and I promise we'll GIVE you ALL we've got.
Loadsa love, a loooong Delly hug and xx's
Hey Guys....was diognosed on Dec 30/2014 aged 40 with triple negative. Finished chemo may/ 2015, almost a year now and still feeling tired and have no patience what so ever. I think everyone expected me to get back to normal i did too, but i really have'nt.( plus i had a bit of a scare 3 weeks ago but mamo and scan was fine) I'm finding it hard to be honest,... to...get over the fact i had this disease went through all that trauma of chemo, lumpectomy then 3 weeks of radio. it was like ..how can i explain it...a whirlwind! Now everything should be normal...right? Nope!! I can't explain how i feel...if i could i think i could do something about it. I feel out of place. Does any1 else? xx
It might be worth taking yourself to your GP, explaining your concerns about your tiredness and having blood tests done. It could possibly be something as simple as anaemia or another "lack of". Hope that is all it is and iron or other vitamin tabs + diet changes do the trick
No wonder you are worn out! You have so much on your plate. I just want to send you a huge hug!
I just wanted to say that I am struggling too and I haven't had chemo to go through so heaven knows!
I was out with friends on Friday and admitted to them that I feel worse now than when I was 'ill'. I had surgery 31 Aug 2011, finished 4 weeks of RADS in November and started a phased return beginning on 50% and back properly by mid December.
Now I am so, so tired and it's getting me down. I look beeping awful, sunken eyes with rings around them. I only work 8 until half four/five and by the time I've cooked tea and tidied I just want to go to bed.
By the time my wee boy is in bed I am well passed exercising. At least when I was off sick I managed to jog 3 or 4 times a week and I know that doing nothing isn't helping.
Keep wondering if low dose AD will give me any more oomph? Anyone tried with success?