Hi there
Tracey so glad you are back home, even though it sounds as if you had a few problems. At least its all over now. Just make sue you take care of yourself.
Sending you and Shannon lots of love
Alison xx
hi all
feel strong enough now to fill you in.
all went ok with operation. went to sleep with gas due to lack of veins then he put needle in foot. when i woke up i heard nurses from ward ask to veiw wound and I freaked and didn’t want to know so basically didn’t look for several days.
during night after the op the nurses were concerned i had a bleed as i was swelling and was in agony.
so next morn it was decided i was bleeding and would be going back to theatre that day. went back down about 4pm to sort bleed out.
during next couple days blood pressure dropped rather a lot. and on the sunday I had to have 2 units of blood and even then due to some more swelling they weren’t sure if i needed to go to theatre a 3rd time.
i was allowed home tuesday after the decision was made i didnt need a 3rd op.
but even my surgeon was shocked by my bruising when he saw me tues morning, my back is purple from shoulder blade down to bum
and that doesnt even count the operation bruising.
there is still some concern i have fluid and now drain is out there is possibilioty of it getting worse
i was still draining 80mls when it had to come out and site is leaking quite a lot.very sore, weak and not very strong emotionally
hope u all ok
i see surgeon tuesday to get results
loive to all
Traceyxx
Hello Tracy and Shannon
Tracy I am so so sorry that you had quite a time of it.I can imagine how you must have felt in hospital. It must be so good to be home again. Don’t be too hard on yourself you are bound to feel weak and emotionally drained after everything you have been through and remember you are still recovering from chemo. Do hope the fluid sorts itself out. I know its not uncommon for many women to have fluid drained after the op.when they get home. My boob is still sounding like a hot water bottle when I move! Thinking about you today when you get your results. I get mine Thursday so know what you are going through as I feel very nervous to say the least.
Tracy don’t bottle anything up just write it here because we all understand. Sending you a big cyber hug.
Shannon hope you had a good weekend and all is well.
I know its all been tough but we are getting through this.
Lots of love
Alison xx
Dear all
Hope you don’t mind that I have read all your stories. I was also on the neo-tango trial, I started it last July but have only just found this site. I wish I had found it earlier as it would have really helped me. I ended up with a lumpectomy and total lymph node clearance and have just had my last radiotherapy session. I felt awful after the chemo and then the operation (had trouble with fluid) but now feel a lot better and the whole experience is starting to fade. Rads is tiring, I had a lot of travelling to do, but nothing to worry about. I am Herceptin + so have to have 18 infusions over a year. I dread them because I to have a vein problem but once the needle is in it is fine and I have had no side effects. The biggest problem is having to find someone to drive me there as I am not alllowed to drive. We live a long way from the hospital. I am still off work and have no energy at the moment. Don,t know how you cope with children
Hello Mary welcome to the neo tango club! Glad that you are through the chemo, op and rads. So glad you get no side effects fron herceptin. Getting to the hosp. can be a problem, will your hosp. provide transport, I know sometimes its not worth it with all the waiting around. I would not rush back to work if you still have no energy. I do not think I will try to go back until January. I am sure we expect to feel like we used to once the main treatments are out the way. I was told after chemo and rads it can take a year to get your energy back. Keep in touch with us all.
Best wishes Alison x
Hi Everyone
Just got my results and after all these months finally some good news. The surgeon took away alot of tissue and managed to get all the nasties so I do not need any more surgery and can start rads. I just cannot believe it after all the bad news. I really did not think I could get through all this but like everyone else somehow we do.
Sending best wishes to all. Tracy hope you are ok, please let us know how things are going.
Love Alison xx
Hi Ladies,
Sorry for my long absence, we’ve been so busy with the house, and strangely enough, I really feel I have loads more energy now, so have been helping out. Also started back to work on Tuesday, but only working from home. I made myself a promise to do a short walk every lunchtime to break the day and get some exercise, and have been doing that and enjoying it. I have almost total movement back in my arm, and I’m really pleased with the whole surgery thing.
Tracey, so sorry to hear you’ve had such a rough time, but take it easy, and I hope the fluid build-up isn’t too bad.
Alison, great to hear your news, so pleased for you.
Mary, nice to hear from you, welcome, hope you stay in touch and we can all getb through this together…
Will post more soon, but have step-son staying this week, and he is keen to get me off the laptop so he can use the x-box! Catch you all soon, take care, love and hugs to all,
Shannon
xxx
Hi everyone,
Have not been on for a while as I am shattered and quite down without knowing why. Have just finished rads and it went well, just red skin. I did use aloe vera gel, don’t know if that made a difference. Will keep using it as I have heard it helps scars to heal. I have had 4 Heceptin infusions. Hate going because of problems with my veins but the actually treatment is okay. I am incredibly tired and just feel as though all of this will go on for ever. Have to have a Muga scan on Tuesday to check my heart. This is standard if you are on Heceptin I have been told. I am on Incapacity benefit and have to go for a medical!!! It was the final straw. Sorry have read this back and I sound as if I am one long moan. It is just not me which makes it worse. Will be more cheerful next time.
Mary xx
Hello everyone
Tracey, please let us know how you are doing. Sending you lots of good wishes.
Shannon, so pleased you are feeling so much better, great news. Must be good to start work again. I am going for a walk every day and I must say it helps.Good luck with the house and youe stepson.
Mary glad you finished the rads. I have to go for my planning on Thursday and imagine I will start the next week. Dont be too hard on yourself feeling tired and down. I have been told this can happen when you are near the end of treatment. I have been feeling tired and my legs are very achey. I know it feels like the treatment will go on for ever but you are getiing there. I am on incapacity benefit as well. I know what you mean about going for a medical and am wondering if I will have to go for one before too ong. It really does not seem fair.
We all have to remeber how far we have all come and have done so well.
Sending hugs to all
Alison x
hi
sorry its been so long but i’m struggling, i know you all are too
i have been unable to cope with the lack of movemoment in my arm since the op. am waiting for rads, on tamoxifen and injections in tummy to stop ovaries. they drained a load of fluid at clinic then gave me my results.
bear in mind i nearly fainted with the draining . my mum said at one point i told him to p**s off .
they took 14 nodes and 3 were cancerous. there was a main tumor 2x2cm and 3 others so apparently a mastectomy was the right way to go…oh and its a great scar apparently… to which i replied
“oh well 2 kids, no fella, cancer, cant move my arm much, 1 boob and a great scar…life cant get much better can it?”
I’ve since had fluid drained twice more and it will need doing probably several more times. it almost seems worthless as the fluid makes it look like i still have 2 boobs!!!
i still cant wear a bra due to the bruising and swelling plus my arm and armpit is so painful.
social services paid for little one to go to boredum busters for the hols and i managed to secure funding for my daughter to go 3 days too. but now as he is too young for their team to deal with that is the end of their involvement. luckily at the moment all is relatively calm.
i was hoping to get back to work b4 may to avoid incapacity but i really not sure that is possible. apart from wanting my life back i worryy about paying the mortgage
i know this is a long post and am sorry but as i couldnt face it b4 there was so much to say
i guess i know how u are feeling and vice versa.
i’m just fed up…
much love to u all
Tracey xxxx
Hi Everyone
Tracey its so good to hear from you. Sounds like you are coming out of a rough time.Sending a cyber hug. I kinow when my lymph nodes were taken out in Sept. it is very painful and my arm took a while to settle. I had two positive nodes.Hope your bruising clears up soon. I still have some left but its getting easier ti sleep on my tummy. Glad they got all your nasty bits out
So glad you got some help over the holidays.
Have you got any news on your rads yet? Shannon are you still going to get them as well? I went for my planning today and tatoos. Mine start next Tuesday and finish at the end of May. They will be treating my breast, under arm and collar bone, I guess you will be the same.
I have been given Tamoxifen to take, have not taken one yet as I am too nervous. I have to take it for a year before going on Arimidex.
Tracy I know its difficult but do not rush back to work. I think I will have to get back by September because of the money.
I know we all have down times but we have come so far and we really have done so well We ought to be really proud of ourselves to have gone through all that chemo etc.
Sending love and hugs
Alison x
Tracey - You say you want to avoid incapacity benefit by going back to work as soon as possible. I don’t fully understand how it works but I have been on it since January and it made up my salary to what it was. I am now on half pay but still get the benefit. Have had to have an interview but they were very nice and now have to have a medical. I will let you know how i get on. I agree with Alison dont go back to work before yoy are fit enough. People soon forget you were ill and working is hard. I now know why I was so tired. i have just had a muga scan after 4 lots of Herceptin. It has damaged my heart so I am off Herceptin and have to have another Muga scan in 3 weeks time. I am frightened as I was pinning my hopes on this drug. Does anyone have any experience of this or any advice? I had all my lymph nodes out in September but have now healed up. It is still numb around the area and down my arm. Take care everyone.
Mary x
Hello Everyone
Tracey hope you are picking up, been thinking about you. Shannon hope all is going well.
I had my second dose of rads today and have started Tamoxifen.
Mary sorry to hear you have had a rough time, I would put a post in the targeted therapies section about herceptin. I am sure there will be others who share your experience.
I had my lymph node out in Sept. and I still have numbness in that area. The pain is only just going. It was more painful in fact than the WLE.
Best wishes
Alison x
Hi to everyone
hope u are all muddling along
there is so many ups and downs isnt there with all this.
does anyone every get fed up of the ‘stay positive’ attitudes and want to have a time out from it all.
having physio on arm, applied for benefits.
each and every day is a struggle physically and mentally.
main stumbling block with benefits is that the ex pays maintenance.
he is looking to move to be nearer girlfriend and get new job!!!
grade 3 but suppose will have to wait for next CT to get more info.
rads delayed due to arm movement.
next see cons beginning june so expect CT b4 then.
everyone says things happen for a reason but struggling to understand that at mo.
somedays i just want to take off and get away from it all.
do u every feel u dont know or like yourself anymore or what is going to get me next?it seems to me whenever i go in the hospital or dr’s i just breakdown. cause of this i dont want people coming to appointments with me then i’m told don’t shut them out or don’t take it out on them as its not their fault. yes i know that but i’m sorry sometimes i just get angry or upset
Hi missusB
I just want to reassure you that these feelings are normal, however, you might find it a great help if you give our helpline a call.
If you feel you can call them, you will find that you can in confidence about your fears and concerns and the team on the helpline are happy to talk to you or just be a listening ear if you feel you want to offload.
Breast Cancer Care are here to support you so please use us if it will help.
The helpline is open Monday to Friday 9am to 5pm and Saturdays 9am to 2pm. The number is free phone 0808 800 6000.
I am sure you will receive plenty of supportive, helpful posts from other users too.
Kind regards
Louise
Facilitator
Hi Everyone
Tracy I thought if I can just get to the end of the chemo everything will be great. I think at this time you are suddenly confronted with all the feelings that have been surpressed whilst you were just concentrating on getting through the chemo.
I have been having counselling at the hosp. and find it a great help.
Last week I just got so so angry and was spitting fire almost. I have never been like that before and even hurled something across the room.
I have been having big mood swings sometimes feeling ok and then others very anxious and down.
You mention the physical thing and I find that hard to come to terms with as I was very active. Now I am having alot of trouble with my legs being stiff and achey and feel like an old woman walking. I also get very tired and have no energy. I know my counsellor warned me about this and said it takes quite a while to get your energy back.
I do hope you get your benefits sorted that is something you can do without.
I sometimes look in the mirror and think who is that. I am beginning to come to terms with the fact that things have changed now .
Have you been to see a counsellor at your hosp. because I can honestly say mine has got me through all this.
Although you may not be able to see it at the mo. things will begin to get better. You have been through a rough time so please be kind to yourself.
I have phoned the helpline a couple of times and they are really great and there for you.
Sending you lots of hugs as you have done so well.
If you feel like a good rant just type it here.
Love Alison x
Hi mary and alison, Shannon where are you?
still no date for rads but i am working thru the arm pain( self punishment ) but my shoulder just wont budge so cant put arm in certain positions. anyone else had this problem?
The sun is shining here in Bournemouth.
one minute i am ok and on a highish mood but then suddenly i am so low it is very worrying.
i just dont know what is right .
my doc says this is all normal and BCN is very worried and wants me to see someone (councellor), been there in past but dunno if it will help.
seeing someone about kids , physio, sons appointments, daughters appointments, docs for jabsin stomach just dunno if i can cope with any more appointments.
sometimes i wonder how the hell i can go back to work at the moment even if i was physically fit cause so many appointments to deal with.
even if i was physically fit am i mentally fit?
has anyone else been feeling vulnerable since all this started? suddenly after the op it hit me.
X
Hi all. I feel just like you all do. I thought once the main traetment was over I would get energy back and be back at work. Instead I am very tired, ache all over and when i have sat in one place for a while I am really stiff. Am off Herceptin because of a heart problem so have had 2 different heart checks and see a consultant shortly. Blood tests carried out to see why I was so tired showed I have an overactive thyroid. It is yet another problem and more appointments… I had a frozed shoulder Missus B before all this started and knew rads would be a problem. I had physio, still having is so more appointments, and shiatsu at a cancer support centre. I managed to keep my arm up so I could have the rads. I have also been very down. Sometimes I am grateful for all the treatment and other times find it hard to keep optimistic. I have not had counselling but may look into it. At the moment feel as if I am going backwards not forward. It does help to talk to you all.
Keep in touch
Mary2 X
Hi Everyone
Tracey I had a frozen shoulder about three years ago and know what its like. I had physio but what really did the trick was a steroid injection. Sorry to hear you had one as well Mary.
I am up and down like a yo yo! I keep waking up at night feeling a bit depressed and anxious.
I have had 8 rads now and its not too bad. My skin is a bit red and my throat dry as they are treating my collar bone but no real complaints. Hope you can get yours underway soon Tracey as you will feel you are making progress again.
No wonder you are tired with so may appointments.
I am getting fed up with my achey , stiff legs.
Wow you live in Bournemouth My mum is from there and I used to spend so much time in Boscombe.
I would say give the counselling a go as I know how much it has helped me.
Mary sorry to hear about the Herceptin, nothing is simple is it. I believe an over active thyroid can make you feel a bit rotten. Hope you get it sorted soon.
I think we all nedd a group hug.
We are all going to keep going and get through this.
Lots of love Alison x
Hi Ladies,
Sorry for my long absence. Like you all, also been struggling, but my way of coping is by trying to shut out the ‘cancer me’ and try to find the ‘pre-cancer me’ again… Once I started work I felt like part of the world again, like the previous 6 months have been lived in a fog, or a dream (or more of a nightmare), I stopped coming on the sites, but I have often thought about you and hoped you were doing ok. Also I’ve been so busy, back to work full-time (from home) but also taking time out each day for rads, and we’re still working on the house, still not moved in. It’s been tough juggling time and energy (the little I have).
Tracey, I’m so sorry you are having such a rough ride, you really do seem to have been through the mill. I hope things are improving for you, and you have some releif with your shoulder. I’m part of the Bournemouth connection too… my family moved to Bearcross when I was 15, my parents and brother are still in the area. We’re due to come down in July to celebrate parents 50th wedding anniversary.
So, I’m now 23 rad sessions down, only 2 to go. Skin is red/pink, even an area on my back where the rays go right through is a bit pink. As I’m small, I’ve been going without a bra, it helps stop the rubbing. I’ve been feeling really tired the last week, and went through a phase of being tired but not sleeping. And mood swings, been very weepy sometimes, and temper on a hair-trigger others.
The stuff that still gets me down is the joint stiffness and aching - glad to hear I’m not the only one - hips, knees and ankles. Alison, I know what you mean, I feel like an old woman when I’ve been sitting down. I haven’t lost any of the weight I put on, and none of my summer clothes fit me, I feel like a blimp. And it looks like I have gone through the menopause, and that’s just switched my hormones off. It doesn’t matter what we do, I can’t get interested physically in my b/f, although he’s been understanding about it, I find it very upsetting.
On the upside, my hair is now back enough that I can go without a hat/scarf. I even used a bit of gel on it the other day to try and get a bit of ‘texture’ to the half inch I have on top. My op scar has healed well, I didn’t need any extra draining (I still think that was due to being sent home with drains still in, for nearly a week after the op, allows things to slow down naturally) I didn’t even do any exercises as they said it might put stress in the implant. But once I felt able, I was helping b/f at the house and doing painting, so arm was getting stretched, and I have about 98% full movement now. I do feel very lucky that there were no problems.
Tracey, big big hugs to you, I really hope things turn around for you soon, you’ve come so far, keep going, there isn’t much more. And rads isn’t so bad, just a pain in the bum having to go to hospital every day. Take up the offer for counselling if you can, anything that might help.
Hugs as well to Alison and Mary, maybe we all need some Cod Liver Oil tablets for our stiff joints! My mum swears by them.
Take care all
Shannon
xxxxxxx