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sallieannie
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01-05-2012
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22-06-2011
10:54
Hi SCACO
I had an SLNB last April, and a partial mx with further lymph node removal and immediate LD recon in Nov. (Chemo in between the two and rads in Feb/Mar).
Like you I have had concerns about lymphoedema, however touch wood I have been fine so far. I have measured my arms occasionally (and again just now!) and they are exactly the same. I have been careful to follow the recommendations (no injections, blood pressure etc on affected side) and have tried not to carry too much on that shoulder. Mine is on my right side and I used to carry my handbag on that side, so I had an excuse to go out and buy some new bags, the kind that go across your body so the weight is on my left shoulder now. Also, I have been having physio ever since my surgery which my hospital is a big fan of. That has probably helped too.
I would say try not to worry, take sensible precautions and do the recommended exercises after your surgery. Good luck and very best wishes to you (and everyone) xxx
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20-06-2011
05:02
What lovely news! Congratulations Leah and family, and welcome to baby Rafael. Wishing him a life full of love and happiness xx
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07-06-2011
06:28
I just went back to work at the beginning of May after being off for a year. When I went off sick I still had most of that year's annual leave yet to take, I didn't give it a second thought and just went off sick. Since I've been back my boss brought it up and said she would look into it for me. She came back to me today to confirm that I am entitled to all the annual leave I didn't take last year, plus my full year's entitlement this year. Hooray - holidays here I come!
So definitely make sure you get all you are entitled to. And have a brilliant holiday! We all deserve one xxx
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07-06-2011
03:33
Hi EB, sorry for what you are going through. I have a hickman line too and I can honestly say that having it put in was the worst thing I have experienced throughout this whole bl00dy thing! I was (allegedly) given a sedative, they said I would feel all pleasantly woozy like I'd had a few drinks. Well I didn't feel sedated at all, just upset and anxious so so much for that! My overriding memory is of lying on the table with tears running down my face 😞
I felt very uncomfortable and aware of it for the first few weeks but then it settled down. If it is bothering you then I would definitely mention it to someone when you are next at the hospital and just make sure everything is okay.
Although having it put in was horrible (and I still hate having it and how it looks) I will say that I have come to appreciate it as a necessary evil. I do feel quite relived when it is treatment time (I have finished chemo now but still on herceptin) and I don't have to worry about needles and finding veins etc. It makes taking blood a doddle too. So there definitely are up-sides. I hope you get used to yours and your treatment goes well. Very best wishes to you xxxx
Sue, I just saw your message as I was posting this, best wishes to you too xxx
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03-06-2011
03:58
Debbie I am so sorry for what you are going through. If my experience can help you at all I thought I would share it. I had the blue dye and sentinal biopsy. It wasn't that bad and I didn't have to stay in overnight.
I then had chemo before surgery. For me, the chemo was very effective and because the lump was still there I was getting constantly monitored and we watched the lump shrink! It was great to know the chemo was working, I think if you have chemo after surgery you just have to HOPE it's doing something, whereas I had MRI evidence (and I could feel it myself) of how much it was shrinking with every treatment. That's the way I chose to look at it anyway!
Another good thing is that I was then able to have less of a surgery. Because the lump was quite big at the start I definitely would have had to have a total mastectomy, as it happened by the time it came to surgery time there was hardly anything left to remove and so I only had to have a partial mastectomy.
There are no two ways about it the next few months are going to be challenging. But there is a lot of support available on here. A year ago I didn't think I could do it either. It is a horrible place to be in so I just wanted to let you know you are not alone. Very best wishes to you xxxxxx
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03-06-2011
03:42
You do sound like lovely friends! I would be wary about food and/or pampering things if there is a chance she might have chemo, it can do very strange things to your sense of smell and taste! Things I used to love I really went off, and a particular smell in some shampoos etc (no idea what it was) made me very nauseous. Of course everyone is different, but it would be a shame if you got her something lovely and she didn't fancy it.
I loved to receive magazines, books and DVDs, or amazon gift vouchers to buy such things. If she is recovering from surgery, and if she does have chemo or radiotherapy, well there is a lot of couch time when you don't feel up to much! And also lots of waiting rooms and appointments, so it is good to have some entertainment. Does she like to read? I think a kindle/e-reader would be an absolutely amazing present.
Also, this might not seem as nice as a having a present to open, but my family gave me some money they had all contributed as a present. I used bits of it here and there for little pick-me-ups like new scarves, hats and earrings (they prefered I chose things like that myself) and I also used some of it towards a weekend away with my husband after chemo finished. I really appreciated it, but I know some people don't like giving money as a present and would rather give actual stuff.
As blue dragonfly says, the best present you can give though is your friendship, and you sound like you are already doing that! I am sure your friend will appreciate anything just becasue it shows you are thinking of her. I hope everything goes well with her treatment xxx
Edit: posted at the same time as Marli! Great idea about the DVD rental.
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03-06-2011
10:18
I had a smear while I was having chemo. The nurse said she would inform the lab about the chemo in case my results looked weird, but that I should definitely still have one anyway. As it happened it turned out normal.
Maz, I am sure I have read that even an "abnormal" result does not necessarily mean anything terrible, I do hope everything is okay for you. You are absolutely right we have enough to worry about 😞
Best wishes to you xxxxxx
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27-05-2011
11:59
Calmlife I am sorry you (and all of us) are in this horrible boat. I am 33 and have no children, and I am dealing with accepting that I probably never will (biological ones anyway - I believe that children do not have to share your genes to be yours, but that is probably a subject for another thread!).
My personal opinion is that I would take any and all treatment offered - I've had chemo, surgery and radiation, and am still on herceptin and tamoxifen. I want to have the best chance of living and even if an extra treatment only offered a tiny % of an extra chance then I think you never know, that could be the bit that tips the balance. Of course everybody thinks and feels differently and only you can decide, but for me I couldn't accept the idea that there was a treatment out there that could have helped and I didn't take it. Chemo is horrible but it's just a few (admittedly miserable!) months, compared to the rest of your life - for me that is no contest.
You are lucky enough to already have a child - is it that important to you to have another one? Sorry I don't mean that to sound horrible, I really don't. Of course this is a difficult decision, I just mean that if I were in your situation I think my priority would be staying well for the child I already had, not risking my health for a potential future child that might not even happen. Again, I really don't mean to sound awful and I do hope I have not upset you by saying this, I can't quite think how to word it better. But I wish you all the best with this decision, your treatment whatever form it takes, and everything else that comes with going through this awful situation. xxxxxx
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22-05-2011
09:17
Hi Rachel
I have been having counselling through the cancer care centre at my hospital. I have never had any kind of therapy or counselling before so to be honest I wasn't sure if I wanted/needed it or if it could help, but then I decided I might as well take anything offered and just see!
I have found it a relief and a help to be able to say things to her that would be terribly distressing for my loved ones to hear, without having to worry about her getting upset, as I might do with them. As well as a listening ear she has given me lots of coping tips and some practical advice too. For instance before I was seeing some work colleagues for the first time she helped me with what I was going to say to them. At the end of the day I still have had BC which is a distressing experience and she cannot change that, but I do feel it is helpful and would recommend giving it a go. I don't think it can hurt but if you do feel it is not for you then you don't have to keep going.
Very best wishes to you (and everyone) xxx
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22-05-2011
09:02
Hi Noanie
I am in Yorkshire and I had them, so I can't see that it is only a Wales/Scotland thing. The chemo nurses handed me the injection after my chemo and I took it home with me to do the next day. I could do it myself if I wanted (err no thanks) or they would arrange for the district nurse do them.
Good luck xx
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20-05-2011
04:02
Hi Lynda
Sorry you are going through this. I had an immediate LD in November too and I am still sore. I have got tingly soreness down the back of my arm when you touch the skin (which I believe is nerve pain due to the lymph removal). Under my arm and around my side is still very tender and I feel quite achy around my shoulder blade I suppose where the muscle should be(especially when I am tired). I can't sleep on the affected side and still take painkillers every day. So you are absolutely not alone!
However I will say that my actual boob feels fine (and has all along), I think that shooting pains sound a bit concerning, although in my unscientific opinion I guess it could just be everything meshing together and healing.
I am having regular physio and have had since my surgery, my hospital is pretty keen on this and strongly believe in the benefit of it. I can't stretch my arm up very well but do my exercises every day and the physio is really helping to improve this. I can't believe your hospital have refused you. Can you talk to your BCN? It was mine who sent me for phsyio, also I would mention the shooting pains. It is a big operation and does take time to heal, but you need to know that there is nothing untoward.
Good luck and best wishes xxxx
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08-05-2011
01:40
Further thanks to everyone who has posted. I went for lunch with my team and was really good to break the ice before I went back.
I started back last week just doing one and a half days a week which will be going up to two and a half days in a couple of weeks. Eventually if I want to I can go back full time or I can stick at 18.5hrs if I want, which I am tempted to do at least for the time being, until I feel a bit more recovered. (Do you ever feel recovered???!!!) I am scared of trying to do too much too soon, and I think work are wary of that too. They are totally going out of their way to make things easy on me and not putting any pressure on. I know I am lucky with this and I hope and wish everyone's work places were so good. I still feel very strange doing anything other than going to the hospital, and am absolutely shattered, but hopefully this will gradually improve.
Janvis I agree with Jude I think it is amazing you have done something as proactive as finding a new job and they do sound understanding so I hope it works out well for you.
Again, thanks for the advice and kind words. Best wishes to all xxx
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29-04-2011
02:35
Noanie, I'm so sorry that you were given a poor prognosis. Personally I have always felt I would take ANY treatment, even if it only offered a tiny amount of extra hope, thinking you never know that extra 1% or whatever might be the bit that tips the balance and makes a difference. However of course everybody feels differently and everybody's situation is different.
Good luck with your treatment and I am sorry your loved ones are far away. Do keep posting there is so much support here xx
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26-04-2011
11:20
My chemo nurse gave me the form, and she got it signed by my onc. I just had to fill in my details and send it off. The card came really quickly too, I was quite impressed. I believe it covers any prescriptions too, even if unrelated to BC, although I might be wrong in that. When I have got prescriptions I have just ticked the medical exemption box and no-one has even questioned it or asked to see my card.
If by any chance you have receipts for the prescriptions you have already had you never know you might be able to claim them back. Worth asking anyway!
Best wishes for your treatment xx
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20-04-2011
12:33
Hi beardie
I got through chemo without needing one. I had 4 EC then 4 tax, and started on herceptin with the tax. I had my surgery afer the chemo and when I went back after my surgery to continue the herceptin my veins had just given up, I think it was just all too much! So I had a hickman line put in. However if I hadn't been continuing with the herceptin I would have got away with it.
Best wishes for your treatment xxx
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20-04-2011
11:07
Thank you guys so much for taking the trouble to reply and for the great advice. I have emailed my line manager and she is setting up a low-key lunch just with my immediate team before I start back, then I don't have to face everyone all at once for the first time on my first day back.
Thanks again for the advice and best wishes to you all xxxx
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19-04-2011
12:09
Hi all, I would really appreciate any advice. I was diagnosed a year ago and had chemo, surgery and rads. Now "just" on herceptin and tamoxifen and am looking at going back to work (been off since starting chemo). I have been lucky, my employers have been brilliant all through this and they are a big university so I am sure they will be up on disability stuff etc, so I am fortunate not to have to worry about them treating me fairly etc. (I hope, anyway!)
I am more worried about the emotional side of things, I am really scared of physically walking in the door of work (stupid I know), thinking people will all look at me and be wondering about me. (I don't know who knows why I have been off. My immediate team obviously does but I'm not sure how far the news will have spread, but big organisations can be gossipy) I am driving myself myself mad thinking stupid things like will everyone be looking at my hair.
I am also scared of how I will physically cope, I still tire easily and I am afraid I will have forgotten how to do my job, or have any interactions with people that aren't hospital of BC-related!
I wish I could just win the lottery and not have to go back at all!
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19-04-2011
11:12
Hahaha Mary Grace!
Elttiks, I get why you are concerned, can someone else open the parcel for you and wash it for you before you even go near it? Googling seems to say the virus can live for 2hrs in the air so I would assume by the time the dress gets to you it would be perfectly safe, but why not ring your hospital if you are unsure.
Hope you have a good night out xx
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28-03-2011
06:02
Donna, I started a thread in the "helpful and interesting" section on appearance and looking good, do feel free to join in and get some tips, it is so hard feeling awful about how you look on top of everything else isn't it. Have you been on a "Look good feel better" session? They are really good and you get some nice free stuff. Best wishes to everyone xxxxx
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