Hi Sue
How is Lisa doing? Hope all is ok.
luvnhugsCarolexxx
Hi Carole
Just seen your message … I check forum most days … find it interesting to read about other people and also to see how people are doing so keep posting everyone.
Lisa is doing good at the moment. She started her rads to her back area ( where secondary lump was removed) last Wednesday. We were kept waiting over an hour and a half as they had got behind and when she went in she was only gone about 10 minutes. She didn’t have to get undressed as the area is just above her waist on the right side so they managed by pulling up her top. The actual zapping took 45 seconds! Fortunately on Thursday we were only kept waiting about 20 minutes. Friday it was canceled! The machine had broken down! So she will hope all is well for tomorrow. She has to have 18 in total and has been told that she will start feeling tired after about a week. Skin went a bit pink after second session but she is putting on loads of aqueous cream and has E45 ready in case in gets even pinker. Other than that she is doing really good. Nipple area now healing more smoothly now that he sorted the end of that stitch out and the shape is really good and she is losing the lumpy area towards her armpit. Wounds in her back healing well, the one where back lump was removed is the most tender but then I think he went quite deep. All in all she is really pleased with the results and how she feels. No pain at all and only some occasional twitching from breast in the beginning when she went to get out of bath etc. She hasn’t attempted swimming yet but has been doing some step aerobics at home making sure she doesn’t attempt to wave her right arm about too high. She just wanted to try to lose some weight around her middle. She used to be a size 10 but is now a 12. ( I wish I was a 12!!) Although she is now on Tamoxifen for 5 years and has been told that some of the weight around her middle may stay due to the Tamoxifen. Her one big complaint is her ankle joints first thing in the morning especially when she says it takes her ages to walk properly and coming down stairs is quite painful. The Onc said that it is the Zoladex implants that she has each month. When she was on chemo she was also on steroids of course and so they helped with the joint pain. She has hot flushes but then she was getting those before Tamoxifen because of the zoladex. Not sure if she has to be on Zoladex for 5 years … initially they said 2 years but Onc says he will make that decision later. Poor Lisa, she has come through all this with such great courage and the op itself has gone so well but she has been left like a menopausal woman with the flushes and the joint pain. She hardly complains though and keeps saying that as long as it gets rid of the cancer she will put up with it. The only real worry now is whether the cancer has spread beyond the back lump. Onc says they will keep a very close eye on her for ages just in case of a rogue cell somewhere.
Hope you are mending well Carole … do you have to have any rads? and is breast now a better shape … no lumpy bits I mean. How are you feeling in yourself?
Lots of love Sue & Lisa.xx
Hi Sue and Lisa
Hope that Lisa’s skin is coping with the rads and that tiredness levels are not too bad. I hope that the rest of the appointements are on schedule, the waiting time for that first one is ridiculous, breakdowns I suppose are out of their control but you would think that they could manage to keep to a better schedule than 1.5 hours delay, makes you wonder what happend at the end of the day. Did they work late, most likely not and women waiting for treatment and sent home. Crazy that.
Thanks for keeping me up to date on Lisa’s progress. I hope you are ok Sue, you are there for Lisa but who is there for you? I hope you have understanding people close to you, remember to look after yourself as well as Lisa.
Hot flushes I can empathise with as I have been early menopause so I know what that is like. Lucky me I dont need rads, sometimes feel a bit of a fraud when I read about women having to go thru rads, chemo, of course the additional worries and treatment for this back lump for Lisa. Then I think well yes I am lucky to have escaped the rads, chemo, meds, lucky to be able to have the reconstruction immediately but I have still lost my breast and had the same worries about it all as anyone else. I am trying to keep in good spirits but last week was very very low indeed, starting to buck up a bit this week. Mainly due to loneliness, frustration at the temporary loss of my independance, and feeling abandoned by my siblings and certain so called friends who have not bothered being in touch since just before Christmas when I got my pathology results from the op. Its like they think I have had the op and all is fine now even tho they all knew before the op that I would be pretty much out of action for a few months. It would be nice to have one of them call me now and again or better still come and see me or best of all take me out for a run in the car or something like that. Sorry for moaning!! Just so fed up of it and want to be better yesterday!! I do have my best mate and my lovely man there for me and my parents so I am not totally on my tod thru this.
Whats this about Lisa not wanting to put her arm up too high is that what the physio advised? Mine had me putting my arm right up high on the first day post op. Maybe that is why my boob is looking so deformed if I am not supposed to be doing that. I will phone my bcn today and ask her - mind you it was her that said swimming was ok at 6 weeks hmmm. I get a lot of movement in the new boob, not so much twitching as definite pulling towards the armpit. I joke that it is shy and trying to hide but it does worry me that it will always be like that and that people will notice it. It is pretty uncomfortable when it remains that way like it did yesterday when I had my first try at driving. Just a short journey followed by a bit of grocery shopping with my man and my boob went into hiding and my back swelled up and went hard again, same thing happens when I went swimming and when I try to hoover, fold a load of washing, etc, etc. All the chores I have to do in stages with a rest in between which is really frustrating for me.
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Glad to hear also that the nip problem is healing well now, mine has been absolutely fine. Is Lisa gonna go back for recon of the nip? I am not sure about that, first off I was determined to have it done, now tho I am thinking that I will leave it as it is, only me and my man who will ever see it so I am trying to just accept it some days I do and some days I don’t.
Ok Sue, sorry to rant on there, have a great day and hugs to you and Lisa, take care.,
luvnhugsCarolexxx
Hi carole,Lisa and Sue,
thought Id pop in to say hi, and see how you all are. its a long haul this thing, some days good some days not so, and having to deal with ‘absent’ friends is aslo difficult, I recently like you Carole felt abandonded by a good friend, who considers himself to be family, he didnt see me in hosp, 30th Nov, i was there for a week, still hasnt visited me at home, I had a heartfelt email conversation with him 2 weeks ago and did not spare my feelings. then I spontaneously bumped into him last sunday, i was out with a friend in a coffee shop, so face to face contact happened, and today he is shaving my head , with a glass of bubbles. No doubt there will be tears, he has apologised, he was my flat mate for many years, i lived with him and his partner when i split up with someone 5 yrs ago, ive held his hand thro illness, family probs, a civil ceremony… i think you get the jist he s not just a friend hes more like a brother. today will be good im sure.
otherwise im due for chemo 2 next week, got a cold/cough at the mo and feel run down.i think i need antibiotics to shake it off,
Ive also been thinking about nipple recon, im going to leave it tho till next year, couldnt face a GA at the mo. my boob is looking good, soft , and dropped into place nicely, glad you are all doing well too,
easy does it , love to you all,
Julie xxxx
Hi Julie
You will have tears with the head shaving Julie … Lisa had to get Simon to do it because it was getting so thin on the sides … they did it late one night …first she laughed and then the tears … it is such a shock even though you are prepared for it. She has very dark hair too which seem to make it worse when it was coming out. She wanted to be in control though and so the decision to shave it. Dave and I cried too but she didn’t ever know it! She didn’t ever really get used to having no hair but she ended up with so many hats that she had one for every outfit and a lovely wig very like her own style before the cancer but she chose slightly redder … her hair was the same style as Michelle behind the bar on Coronation Street. Her attitude was good though and insisted that she was ‘just getting on with it’. She also wore a soft beanie type hat in bed as she said she couldn’t face looking at herself to start off with. The eyelashes and eyebrows go too and she said that it almost worse because you can’t hide that so much but she did well with eyebrow pencil, dark eyeshadow and sunglasses. Having a terrific sense of humour she made lots of jokes about everyone in chemo looking like the kids on Village of the Damned ! Her hair is now coming back quite thickly and just over half and inch long but she can’t do anything with it yet … I promised her that we will have a look at doing something with it this week. she is still wearing her hats.
The rads are going Ok … she has had 7 out of 18 and feeling Ok so far. Just hoping that teh scan when she has it about March time proves there is no cancer left anywhere.
So pleased that you bumped into your friend again … I will be thinking about you and the head shaving … hopefully the laughter will outdo the tears … its just one more step towards getting rid of this damned disease.
Pleased that your new boob is looking good too… it does help having the recon doesn’t it? Lisa too will decided on nipple recon next year. You have all been through so much and now you have the chemo that you need a rest before anything else happens.
Lots of love to you … we think about you and Carole loads
Sue & Lisa xx
Hi Julie, Sue and Lisa
So good to keep up with all your news. Julie I am delighted to hear that the difficulties with your friend have been resolved and that he is there for you with one of the most difficult parts as in the shaving, try to look on it as a way forward, being a step nearer to recovery. My heart goes out to you xx.
Sue I am chuffed to hear that Lisa seems to be going well thru the rads and wish her well with the rest of them and the scan at the end of it, sending positive vibes to blast this thing out of Lisa and Julie.
Take care all of you and thanks so much for being there for me thru your difficult times.
luvnhugsCarolexxx