Angie- hope you've spoken to macmillan nurse today and everything is ok.
Philomena- so sorry about you're arms. I started having problems on surgery side after radiotherapy too- it really messes up the tissue apparently. I know just what you mean about last years calendar- it really brought home how LONG the whole thing is and how life just revolves around appointments!
Judy- finger in socket- lol- mine was just short and flat but has now started sticking out all over the place, especially on top. wondering if this is a sign it's going curly?
Katebil- part time sounds good, hope they say yes.This all makes you realize working all the time just isn't important doesn't it?
I've had plastic surgeon appt through for next week. I'll go and see what my options are but I don't honestly think I can face being messed around with just now. We must all be having anniversary of diagnosis about now- mine's on 21st, I know diggywiggy had hers. can't believe it's nearly. a year and I'm still not well
love to everyone xxx
Good afternoon Angels,
Angie - hope you got to speak with your BCN about the pains and she has either got you seen by someone or put your mind at rest about it.
Fecinora, hope you are okay and getting some support around the next surgery, it can't be easy to get your head around the big step you are now taking.
Lynn, hope your return to work is going okay. I am officially full time but I'm using holidays carried forward from last year to keep to 4 days per week still. I really can't imagine that I would see any of the weekends if I was doing 5 full days so my life wouldn't be balanced at all so I'm going to ask that from February I go part-time and do 4 days per week officially without having to use holidays to do it, I'm not sure what the response is going to be but I really don't want to work and sleep and do nothing else.
Amber - sorry to hear your mammogram wasn't a good experience, I have the same view as Judy, I've only got to go through the pain for one boob in future - assuming they don't do a mammogram on a reconstructed boob!?
I have hit a major milestone today.........went for a haircut! Well it wasn't really a haircut, it was a few straggly hairs trimmed and the rest left to grow but it feels lots better! The hairdresser didn't charge me for it as she said it was only a few bits.....didn't feel like it to me! 🙂
I think I missed responding to the meal on our meet up - yes please I'd like to go to the world buffet with everyone else! I checked the trains today and the cheap fares to Manchester have been released but not the return so I haven't booked yet but hopefully at the weekend I will get that booked.
I have an appointment with the ONC on Thursday so I'm hoping to get a date for my 1 year mammogram and answers to a few questions......
Hope everyone else is doing okay and not suffering too much.
well...... what can i say, the doc said blood pressure is extremely high and did it twice to be sure but he said we'll pursue that at a later date?? he was only worried about the clot - which its not a clot, so when i asked about the arm and the pains in chest and ribs he said its a sign of a clot?? so ive not been too bad over the weekend and if i see the macmillan nurse she is really the only one who actually knows about chemo after effects, gp's just arent that clued up.
i think it felt like when i had docetaxol and my legs were killing me, which he thought was another sign of a clot! i'm not knocking him, he was great, never had blood sent away in a taxi before, it was that quick and itwas 5 oclock in the evening.
i have been dizzy again in tesco (how embarrassing would that be if i keeled over in my trolley) but now i know the BP is up it didnt worry me so much. so just relaxing and hopefully my trusty chemo nurse will throw some light on it tommorow.
have any of you noticed that your BP has gone up since having chemo and stuff? i never had high blood pressure before getting BC.
Angiepops- hope you're feeling better today. I'm with sandy. we've been through so much physically,and the wierd effects seem to carry on and on. What did your dr say to do now it's not ablood clot? If you feel unwell, go to a&e, don't wait for the macmillan nurse. You could phone the helpline for advice? take care lovely xxx
Angie - I had the same stabbing pains and hot flushes when the implant was getting squashed by the swelling after rads. They were worried about infections too but my temperature stayed within limits, and you've had a blood test. Did they take your temperature? I don't know the symptoms of Lymphoedema maybe Rozz could rule that one out as I know that causes swellings in arm. Also thrombosis can cause swellings of the joints too. Are your ankles ok? Some tablets used for post cancer prevention can bring on some forms of bone deficiency too, or even Arthritis.
That being said, it's the dizzy thing, blood pressure, and chest pains that suggests you should hassle the doctors about Angie. If you get them again I would go to straight to A&E. We've all had one hell of a ride and nobody could blame us if we are worried. We have no idea what side effects of our treatment may have prematurely bought on. Stay vigilant sweetie and demand the service that we have all paid into at some time or another. Let us know how you get on and take it easy. x
Mel - I too am beginning to overwhelmed by the length of time of our treatment. They are going to try to canula IV herceptin again on Tuesday but I'm petrified. I have to stay in hospital all day starting with the dreaded hunt for a vein blood test first thing and they are not to take it from the IV vein which has to be saved for the herceptin.
I called the chemo to ask if they could put the canula in, then go to pathology to get the blood from it, and then back to chemo for the herceptin. The answer was a resounding No. I can't sleep and I keep crying just from the thought of it. Anyway if they dig around this time for over half an hour they'll definatly know about it the way i'm feeling.
Lynn - Thanks for that. I do have a much better Idea of a timeline and it looks like phasing the work hours is a must to make sure we don't overdo things. I won't be able to phase as I will be looking for a new job but the excersing to build up to part time work looks like a plan.
Love & Hugs ladies. xxxx
Morning Angels so glad to hear from all you Angels that have not been on for a while. I am not even going to try and give you all an individual reply because my memory could not match the names with the reply. Sandy asked when I felt ready to go back to work. My treatment rads finished 15th October, I was not ready to go back to work at that point and did feel a bit guilty as I know some of you girls worked right through treatment and went back during rads. I had the docs on 8 th November and she was great she told me she would not be sending me back it was my call. I decided then to aim for the new year like something to work towards. I started an exercise class called Can move for people recovering from cancer run by McMillan and Glasgow city council. This has helped me loads, every week doing a bit more and building up fitness. I had a meeting with my boss before Christmas and I agreed with her my phased return, I started on Tuesday 9 to 1pm 4 hrs then Thurday 4hrs so that was 8 this week. Feeling ok but I was tired around 5 o'clock time on the days I worked. I am doing 3- 4 hour days next week so 12 hours, week 3 is 3- 5 hr days, week 4 is 4- 5hr days , week 5 is 4 -6 hr days.. week 6 and seven I'm back to 5- 7 hr days, although I'm only working 28 hrs both weeks because I've arranged to have wed off so I can finish my free 12 week exercise class. So not back full time until mid/end February . The thing is it has got to be right for you, and depends on the job you do too. Tame care Angels hope you all have a good weekend. This is my last blowout tonight got friends coming for dinner diet starts Monday lol. Lynn x
just when you think its safe to come out of the water.....
this is whats happened to me over the last couple of days - has anyone had anything similar?
i was at work, but sat chatting when i got really sharp pains in the middle of my chest. it was only for a couple of minutes and then it went. so the next day, i got to work and started going dizzy and lightheaded, this happened twice and i was hot but it wasnt a flush. i noticed that my op arm had swelled at the wrist and on my hand, that looked weird. then i couldnt walk properly on my right foot, it was so painful, that lasted about 20 mins. i came home early, went to docs who took blood and thought it was a clot, but it wasnt, they rang me an hour later to say blood was fine. today, wrist and hand is swelling again. doc said bp was very high. so its friday night and i cant see my macmillan nurse until monday. im very tired too. how very strange. any ideas??
fecinora - i feel the same about being able to detect behing recon? i need to investigate this too. hope youre well.
LNMcg - good for you being back on full pay
sandy - you sound very focussed and positive
moira - nice to hear from you
Amberits done now, it sounds like you had an awful time, i'm dreading going back too. hope youre feeling better now.
diggywiggy - glad youre feeling better, i think we have down days dont we.
maisiecake mel - i know how you feel, i have to say that i couldnt cope enough to get something from the doctors and now i feel so much better. hope youre doing ok.
Mel A - i think youre right not to make any decisions just now. i'm not sure i'm thinking completely normal all the time, maybe a couple of months down the line things might be different.
so to all you lot judy, debra, pauline, lori, katebil, and who have i missed....
hope youre all well.
not managing to post much but trying to keep up with you all.
Feccinora- so sorry about your news and that you are facing more surgery. We'll all be there to support you sending hugs xxx
Diggywiggy- you're certainly not alone in not feeling better- It seems like a long haul doesn't it? Glad you're seeing a counsellor. I'm finding mine really useful. In fact I'm taking all help offered from anywhere! one day at a time seems to be helping me at the moment. I surprised myself yesterday by having an ok day- didn't last though, crap today!
Angie- I'm seeing my onc in feb which is about 1 year on but I don't know if that's mammogram time or just a chat. I'm sure they've told me I just haven't absorbed it. I worry all the time about the lumps and bumps in boob( scar tissue) and the pain i've now developed under arm and down inti chest. I decided to bother the bcn about this and they've referred me for physio.
Philomena- great news on your retirement. this is your time now!
I'm really looking forward to meeting up on 4th and 5th. Is there anything I should be doing like paying?
If partners are coming I may bring mine to the meal too. He's thinking of driving me up and staying with student son if there is space on his floor, so he can watch him play hockey.
I spoke to my boss on the phone this week but can't honestly see me going back yet for a while. I'm working on not obssessing about worries which are completely out of my control; getting through the day without crying; seeing people lots and trying to do some simple activities like walking.
I feel as if the unexpected arrival of cancer in my life has so shattered my sense of security that any catastrophe seems likely now - illness and death of loved ones,accidents, social breakdown, war, global warming, every bad news story seems to be something that could just as easily happen to me and mine. Because after all if cancer happened then why not the rest? I've lost my expectation that everything will be alright. Hoping these feelings fade in time! using cbt with psychologist to try to change my thinkingand of course all the drugs!!! hope this doesn't sound too depressing because despite everything i think i'm slowly improving. oh and i signed up for a ukelele for beginners class, because why not?
love to all you amazing angels wherever you are in your journey. xxxxx
Lynn - Forgot to ask how long after treatment did you feel like starting work? xxx
Im am sorry to hear you have the BRCA2 gene but there are many inspiring stories and technology is moving on so rapidly and it looks like your team are taking control and removing anything which could cause a risk. I decided on recon because i went overboard on the Mastectomy and Rads. Neo-Adjuvent chemo shrunk the tumor so much that they recomended lumpectomy and said it was my choice to have MX or Rads. I went for both and the immediate recon but I am worried that I can't feel whats going on now.
Diggy I agree with Mel that we shouldn't be pushed or feel guilty about having to work. I know now that people do look at us as cancer survivors and we should be estatic and eagerly return to work with a new zest for life.
Instead I constantly worry about it returning, not spending time with my family and working like i used to. I also still have peeling toe nails and my back aches, my hair is between short furry stuck up tufts and I don't feel like I can cope with things how I used to. So i'm NOT going back to WORK. Not until i'm good and ready. This thing is not going to come back and get me when i'm down. No sirreeee.
So I aslo agree with Mel when she says how you feel can effect your health. Stay strong angels. We know more than anyone how each other is feeling. Love and hugs Sandy. xxxxx
I havnt posted for ages, time for an update. I hope everyone is OK.
Diggy Wiggy, going back to work is like hazard dodging. I so feel for you. Even meeting friends I havnt seen for a while, I need to be 'armoured up' ready. I've not got the hang of being a no-well person. I'm not a person with cancer now, but still look like one. My hair looks like Nelson Mandela's. It sticks out of the wig now and is grey/white, so wig doesnt go out in daylight now. I want to see what its going to do before I colour it. Toes still numb, other big toenail fell off last week.
I have been discharged from the onc with no follow up, because my gene test came back BRCA2 positive in November, so I'm waiting on surgeon appts for double mx and ovary/tubes out. I do want reconstruction, but onc said it is possible in the small risk of bc returning in chest wall or muscle, then I might self detect it easier with no recon. Is anyone else worrying about this?
Is anyone post menopause getting Dexa scans? Onc said you get 2 yearly ones on Letrozole, but no guidelines for BRCA post surgeries. Its better to detect any bone probs early before it goes on to osteoporosis. She said I need to ask GP.
Tkae care all xx
Haven't posted for a while but always checking you girls are okay. Thanks Rozz for booking the rooms and Mel for booking the meal. I am looking forward to meeting you all. Guess I better check out the trains from Somerset. I have been back at work since beginning of Oct on "light duties". They now want me back full time (4 days a week) and teaching. I was not having a good day today, very tired, hard to concentrate and counting the hours to home time. A colleague who has been covering my job asked me about my plans. I tried to explain that I couldn't think beyond the end of today, that it was my anniversary of DX, but she wasn't listening. Then told me about her friend who had a double MX and now has an infection so needs more surgery and can't have a reconstruction........ Not sure how this was meant to make me feel but held it together until I got home then cried my eyes out for hours. Feel completely useless. Why aren't I "better"? Seeing counsellor in morning. Sorry to moan but it is so hard when people don't understand. I know you all will. Okayntime for sleep - if I can get the image of that poor woman out of my head. Lots of love to you all. Diggy Wiggy x
thanks girls, so its pretty normal really. not sure what to expect, theyve lost me in the system so many times i'm keeping a close eye on them now.
ive had an email back from the breast clinic saying that i will probably be seen by the surgeon around march/april 2014. is anyone else waiting this long for 1 year checks, are you seeing surgeons or onc's. i was dx 5th feb 2013 and had mx 6th march 2013. Am i just being too eager?
Yaay....Thanks Mel. My OH is usually not too concerned about being in an all female environment...lol, however, this is a little different to what any of us are used to but I can't wait. Not long now....xxxx
last day off today, back to work tommorow, just done all the rotas for extra jobs, brasso, carpets to clean, all that stuff, the girls are gonna love me haha. i cant wait actually, just to get back to the normal flow, hoping the snow doesnt arrive just yet though, its a long drive to work and back.
ive got the docs on tuesday to see if i'm still nuts. i think the tablets have really helped, i dont feel quite so angry all the time, much more relaxed about everything, probably a bit too chilled if anything.
hope everyone is doing ok, a lot of 1 year checks are coming up arent they, i'm trying to get one sorted for me. maybe they'll be back to work tommorow and reply to my email.
good luck anyone returning to work tommorow
Mel - Baring any major mishaps OH and I will be wanting to join in for the meal and 7.30 sounds great.
Amber - Fab to hear from you. Thank goodness you didn't get on the plane an then found it couldn't land but it sounds like youve had a really good time.
Ive been to hospital again as my implant started to rise up to my collar bone. Seriously I could rest my chin on it. The head surgeon had a look and wasn't too worried as he had seen swelling before due to radiotherapy which in turn has temporarily contracted the implant upwards and it should settle back down. He also explained that he came in and actually consulted during my surgery and that because I had opted for expander implant he had recomended that I had the most expensive one put in which would stand up to the rads, (he did tell me the name but I can't remember). The upside to this is that I only have to have minor surgery just to remove the port from the expander which will make it permanent. Im really chuffed as I love how I look already and the scarring is already starting to fade a little. I'm also worried about surgery after getting a hematoma the last time.
Ive been given a book by my husbands son in law. Bless him. He ordered it of the internet for me and it's called "My Mummy Wears a Wig - Does Yours" and is the true story of Michelle Williams - Huw, a cancer survivor, and her journey through BC. Im rivetted to it at the moment but as soon as ive finished it I will pass it on to you.
Got to go. Log fire and an organge is calling. Lol. Take it easy angels. Lv n Hugs Sandy. xxx
Happy New year angels!! A little late but was away with friends in Yorkshire with no phone signal. Came back yesterday - had a great time, but tired and went to bed at 8pm so I could get up for work today. I am supposed to be back full time now, so will see how that goes. I have decided to give up drink and have a dry January - I believe there is a Cancer Research fundraising thing around this but only heard about that after I decided to do it. Tried it last year but failed (ha, ha) so working on improving my self discipline.
Love and best wishes to you all for 2014 and thinking especially of those who of you currently facing more ups and downs of this journey.
I was dx at beg March. I have 2 appointments one with surgical team and one with onc but not till Arpil/May and I don't know if I will have a mammogram. Your discussion has prompted me to follow up and find out a bit more what to expect.
Yes there is a live chat running tonight form 8.30 to 9.30pm.
Best wishes Sam, Facilitator
i emailed the breast clinic nurse today to find out when they will be seeing me again, scotlands still on a bank holiday though so it might not get seen just yet.
hair ladies? - have we all got curly locks? mine seems to grow bigger rather than longer, its a bit like a sponge - or a scourer type hair. is it just me or are we all the same?
IS THERE A LIVE CHAT TONIGHT bcc people?
happy new year angels!!!
haven't posted for a while as struggling with anxiety and depression. Think I've missed lots.
Judy- thinking of you and fingers crossed it turns out to be nothing important.
hope everyone else is doing ok . i managed to get through xmas with lots of great support from friends and family. Glad the year is over and hoping 2014 will be better for all of us. I'm taking one day at a time and making no plans at the moment. Just trying to walk every day. The good thing about anxiety is i have no appetite, so the weight is dropping off at the mo!
love to you all mel xx
welcome to 2014 girls
i had a very quiet night watching nicholas cage films on tv and laying on the settee relaxing drinking tea and eating goodies. I stayed in bed til 11 (omg!) today and its sunny and bright, i'm ready for the next year to be much better than the last one.
my new year resolution is to spend more time with my family than i have in the past. oh - and to try and grow straight hair.
what are your new year resolutions ?
ive broke up from work today for another 5 days and i'm feeling it i can tell you. just had to pop some painkillers because i ache so much today, i'm not normally this bad, maybe the cold weather isnt helping. Ive not seen an onc since july either, should we be getting appointments through - i was dx on 6 feb this year? Should i ring the clinic and see whats what, they lost me in the system a few times through treatment.
judy - what a long time to wait to go back, you must be gutted. Good thing is though, they've seen it and are acting on it. Fingers crossed x
Lori - ive got the anti depressants too, they seem to take the edge off dont they. i dont expect to have them for long so i hope i'm ok when they take them off me.
Happy New Year Awesome April Angels
Lets hope 2014 is a good one