I will ask the technical team to have a look at amending the title.
i think different hospitals have different procedures. I had a letter this morning changing my appointment from september to May!!!!!!!!! Am panicking now in case they think I NEED to be seen earlier!
I have been told that I'll hav e a mammo every 12 months from now on, but this may be because I am being treated privately. My last mammo came back as clear and the tumour only showed up under ultrasound so I won't put all faith in the mammo result IF it's clear.
Thanks Cress. Glad to hear that Cybele is fine and is indeed moving forward. Please pass on my best wishes to her when you next speak. I wish her all the best as indeed I do everybody.
I feel a bit odd reporting on a third party BC, but Cybele tells me the reason she has not been on is that she is just too busy with her university course. So - Yay to moving forward!
QD - what were you told about the change to mammos? I have heard from others that some ladies over national screening age are now getting them every 18 months, but I have been told that I will only get mine every 2 years because I only have the one boob left and it didn't have cancer so I don't need to worry apparently . I can't find any evidence that NICE guidelines have changed, so it must be the policies of hospitals are changing for some reason (to save a bit of cash???).
Maire - I assume you need to jump up and down and shout MODERATOR.
hi Border Collies!!!! good luck with anniv mammo. we dont do them in birmingham on anniversary of diagnosis anymore. its 18 months ish post surgery. i was diagnosed on Nov 30th Started chemo on Dec 21st then had surgery on May23rd. my anniversary mammo is actually booked for sept 8th 2014! hopefully by then mr booblie will be less sore and will have settled down.
Hi everybody. Just popping in to see how everyone is and it would seem that most of us are doing ok. I hate the fact that you can't scroll through the posts whilst you are posting and I just cannot remember every separate scenario from everyone but hugs to those still struggling and well done to those who are doing well. I was diagnosed on 30th October 2012, surgery 7th November, so I'm waiting for the appointment letter to pop through the door. I get nervous just thinking about a mammo. I still treat the lumpectomy breast very carefully and hate the thought of the mammo machine! I suppose we are all at much the same stage and are all having similar anxieties.
Cress - have you heard anything from Cybele? She hasn't posted in ages and there has also been no activity on her Face Book page since, I think, July. She was always so vocal on here that the silence is worrying. Just would like to know that she is all right. Does anybody know.
You sound like me QD! I think you can be reassured it was just an affectionate lick. Maybe you had used particularly tasy soap!
fingers crossed for you both! hug.
now am i being stupid or what? my brother has a dog - "Fudge" and I always fuss her and she has stayed at mine a couple of times. my bro popped round yesterday and I was cuddling Fudge when she suddenly licked my chest! she has never done that before - it was right where the cleavage begins - not where mr lumpy pants was. should i be worried? she didnt sem unduly distressed. she was happy and wagging her tail but i ve heard that dogs can smell cancer and am now paranoid. i cant feel any lumps or anything. maybe she was just giving me some support?
Well, she didn't find anything poking about, so that must be good. And I had no urge to cry at all. All felt like something that happened to someone else. In fact, I think it did happen to someone else. Much like you, Maire, I am different now.
I didn't exactly pass with flying colours though - have to have a bone scan in next couple of weeks because of the ongoing pain. Mainly because it is worse in one leg than the other. I had one in Feb and that was clear, so I am not too worried. But it is still not over.
The results appointment is the day before we go on holiday. The holiday to replace the one we cancelled back in Feb 2012 so I could be admitted to hospital instead. She offered to postpone the results until after the holiday, but I told her I am still going no matter what the results are. So, time to cross everything again.
Also possibly an MRI of my lower back and on my remaining boob. Getting to the end of this is going to take just a little bit longer.
I feel OK about it all. Lost the will to worry about stuff that I have no control over.
Really pleased that some of us are still checking in - we will need to add 2012 to our thread title soon to avoid confusion.
Hang in there girlies, xxxx
I have my mammogram next Friday and, apart from feeling like crap still with this ever worsening vertigo problem I have inherited post chemo, I will also be pooing my pants getting my singular boobie squashed in the vice and waiting for results. That is if I can actually manage to stagger into the hospital and stay upright while I'm flattened out!!
Time is dragging it's heels, as it alway does when you're waiting for something and it's still almost 3 weeks off until I see the ENT specialist. Even then, it will just be an initial consultation and referral for more tests no doubt.
I wish I could come on here and be cheerful
Oh, actually, on a positive note, all my blood tests (there were numerous) that my GP requested have come back ok so I can just about muster up an Hurrah for that
For anyone else who's not having a great time ...... ((((((hugs))))))
All those who are doing well and moving on...... a big thumbs up, enjoy!! x
Hope your appointment didn't stir up too many scary emotions Cressida and everything is ok in boobland.
It's a scary time. I'm guessing most of us are anticipating some anniversaries. This time last year i was anticipating my first surgery (17th Oct). I took a selfie just before my op. Odd thing to do I suppose. A year later I look quite a bit different from that person. The 'cure' has taken its toll and continues to. I'm taking a wee holiday from Tamoxifen just to give my body a bit of a break and to try and get a decent night's sleep. I've had horrendous hip pain -bone scan all clear thank God-but I was in a scary place for a week or two. I never want to go back there. I know we can't name names on here but a certain breast care nurse in Glasgow deserves a sainthood for the great work she does in getting things moving and in the care she gives to everyone that comes her way!
Anyway enough from maudlin Maire.
I hope everyone is moving forward and that those of us still coping with symtoms and side effects get some respite soon.
Off to enjoy the sun.
I have my 6 month post treatment Onc check up this Friday. And then my surgery check up next week. If I can pass the poke me about tests then that should be it for at least 6 months, if not a year. It has taken me 19 months to get here and sometimes I felt I would never would, but I did.
My aim on Friday is not to get upset. Just walking back in will bring it all back. But I will try to be mindful of the present and not let the past dominate me.
In other news, learning sign language is really difficult. My brain does not work like it used to. I look at the teacher doing a sign and I have to rotate it in my head as well as try and follow the movement. Just as I think I have it, she does another one, or more like about 3 more. She has to get hold of my hands and manipulate me into the sign, then I instantly forget it.
If anyone else tells me that this is just what happens at my age, I may get arrested.
Work ok but I think I'm getting a cold as feeling pretty rubbish. Thanks Lisalow and Cress. And QD like you, not very phased - if you're back, you're back>
Cress I know some sign language but not sure it's authentic, you know the two fingers type of sign language!!!
Sorry - couldnt resist! xxxx
My mammogram came back clear so that's good and I'm booked in for recon 2nd december as well as reduction on remaining one. So, i get new tits and a tummy tuck for christmas.......I WILL get into my old jeans!!!!
It's lovely that we're all still in touch.
Love to all
sending a hug to anyone who is suffering still.
Guilt is a sterile emotion . (Cant remember who is feeling guilty and this new forum layout wont let me scroll the posts - so frustrating!).
i was supposed to be on the model day in Birmingham but missed it thanks to having a new gas meter fitted. If it could go wrong it went wrong! at one point I had no gas whatsoever ! aaargh!!!!
My phased return is going well but at my place -if youre there youre deemed to be well enough to be there! I went into the saniotorium and lay down on the bed and grabbed a power nap last week!!!!! will def do the same this week!
Cress - enjoy your course.
went to visit my son today. omg! the first thing I did was clean his fridge and his bathroom! then i suggested that changing his bedding and towels might be a good idea!!!! boys! urgh!!!!
Well done QD.
Hope work was OK Mandy
And guilt is a pretty useless emotion Shellebelle. Unless you have murdered someone (or, insert horrific crime of your choice). Have you? Otherwise I don't think that not going back to work when you are not well enough really requires it.
Seriously, I have not tried to work. I realise I am "lucky" because I understood about critical illness policies and could afford to pay for one, so now I am mortgage free. I also got ejected from my job just before all this sh*t hit the fan. No doubt, if I had a job to go back to, I would be feeling that I should. As it is, I can't face trying to get and start a new job when I am so knackered and foggy brained.
Instead I have started a sign language course. Always meant to do it, so now I am. It only requires me to concentrate for 2 hours at a time, and that seems to be quite a challenge.
I think the thing we have learned, that other people don't know, is that we won't live forever. We never know how long we have. Hopefully it will be a long time, but, let's not waste any of it.
Keep on keeping on Crackers, but try to enjoy it as well, xxxx
Not been in for a while.... went back to work today! Very wierd!!! im meant to be phasing in but am on 6.30am train to London tomorrow..... doesnt feel very phased to me....
I wasnt looking forward to it but guess it might take my mind of cancer and the awful panics i have...went to doctors tonight as have had a lump in my throat. it;s a cyst apparently and is very common. probably wouldnt have noticed it before but now have severe paranoia!
hope everyone else doing ok..... sorry not up to speed with all posts but sending all my love. xx
I presume you are only in the secondaries group - I am not in that group so I can't say Hi on there, so don't leave this group!
Keep popping in to let us know how you are getting on,
QD - trust all went brilliantly today!!!
Cress - thanks, am now an FB group member
Cybele - hope the swimming and positive focus is getting through the herceptin 'barrier'. I expect it will get better with time. You'll be proud of me, I hope - I've swum 3 weeks in a row, albeit only for 20 lengths at a time, but it's a start...
Never heard of Nystagmus, but have heard of the Epley manouvre. My mum had a serious and unexplained vertigo, to the point of simply falling over. She was told to do Epley and it did work, but it made it worse to begin with. It made it so much worse to begin with, that she had to hold on to the bed so as not to fall off. She initially refused to carry on with Epley as she felt so bad, but when she did it actually worked (after about a week of practice). Obvs you have a different case, but thought you should know that Epley can work, even when it seems to be making it worse.
I am a bit concerned that the specialist is sending you back to the GP to see what can be done. Not very promising. Maybe what needs to be done is another specialist.
All sounds a bit cr*p. I would def not go back to work yet; you still haven't got to the getting over it stage. I finally feel well enough to recover. You can't recover whilst you are still feeling ill and having medical problems that need treating. I firmly believe we all deserve a bit of time, once our medical problems are mostly under control, to recuperate, recover and convalesce. You can't do that back at work. If you don't deserve bit of convalescence after cancer, then wtf???
Let me know how you get on with your endocrinologist - mine said it is not unusual to see ladies after BC treatment. Yet another gift of BC treatment.
its the assembly tomorrow eek! in the end in wrote a script (im a drma teacher - what else would i do!) and its a duologue between myself and the pe tchr (who had this 9 months before me). thanks for all your input.
Shellebelle Hi44 Mairie and Lisalouw - i hope you all feel better soon. the dizzy thing sounds awful.
Cress - what can i say? being taken seriously at last?!!!!!
Took number one son to uni last sat. i sobbed for ages - even though he's 19 he's still my baby! on the plus side theres loads less washing and ironing, his room is tidy and the food bill has gone down!
The diazepam worked & I got through the MRI - thank goodness! No waiting for the appointment for the electrodes test.
Cressida - I had a bone scan (DEXA scan ) when I started taking the Letrozole at the beginning of July. I haven't had the results yet though! Seen the oncologist once since then at the radiotherapy department but she hadn't got my notes so didn't know the results! My next appointment has come through for 6th December but I'm going to ask if I can see her sooner. When the oncologist put me on Letrozole she automatically put me on Adcal-D3 1500mg tablets twice a day because of the risk of osteoporosis. The tablets are calcium carbonate and vitamin D3.
Shellebelle - poor you you are suffering. I hope they find something to make it easier for you soon.
Take care & enjoy the sunshine while we've got it.
Poor you Shellebelle - the ordinary after effects are enough for anyone to cope with without feeling dizzy all the time. Fingers crossed that they come up with something to help you now they know that you "really are" dizzy.
After 4 months since ending chemo and complaining of dizziness to whoever would listen, CT scans, blood tests, MRI scan, various tablets, I finally got to see a Dr at a 'dizzy' clinic on Tuesday who recorded my eye movements, did a few tests and declared I was indeed dizzy! No sh~~ Sherlock!!!!!! I have something called Nystagmus. He didn't know what had caused it, although it's possibly damage from chemotherapy to the vestibular system. The only treatment he offered, which he said may/may not help because it was more for another type of vertigo, was the Epley manouvre, which I agreed to but it hasn't helped one bit, in fact I feel worse. Anyway, he's writing to my GP whom I am seeing this coming Tuesday to find out what else can be done, if anything, to sort me out.
I've also been referred to an Endrocrinologist (appt Nov) with regards to my petuitary gland, which has some empty sella ?? found on an MRI scan. They don't know whether it affects me in any way or not, so....more tests to come.
Mastectomy side does feel firmer and a bit tight, which is probably rads damage . I also still have slight numbness, sometimes aching arm, puffy under armpit and pain from elbow to wrist inside forearm occassionally from the ANC.
3 months into tamoxifen and coping with side effects, but have to say I do feel blooming grumpy most of the time (constant dizziness doesn't help). Hot flushes aren't as bad as when having chemo, fuzzy headaches quite often, had 1 horrendous migraine, bit of stiffness and pain in fingers/leg/ankle joints. Initial nausea gone but appetite still slightly decreased so have managed to drop about half a stone (one good thing I suppose).
Got my appointment through for annual mammogram 18th October (am trying not to think too much about it).
I was supposed to be starting back at work 1st October but may have to delay even longer if I don't improve soon. There's no way I can sit and concentrate when I feel like I'm on a boat bobbing across the waves most of the time.....urgh!
Other than that, I'm ok ... I think????
I finally saw the thyroid woman. Or endocrinologist, as I expect she would prefer to be called. She feels there is nothing to worry about. She did a pretty thorough examination and, apparently, I am pretty good shape apart from the cancer and being "a bit over weight". Hmmm. I have put on a stone in the last couple of months. I was blaming my thyroid, but now it seems I have to accept responsibility and it may be due to the Baileys and the cheese. She does feel it is a result of the treatment and probably will sort itself out over time. She did a load more blood tests and I have to have a load more later, so she does seem to be taking it seriously. I am actually quite happy with her preference for not trying meds yet, as I am so sick of pills and all the side effects. So that is another problem I can put in the box for now.
And you snuck in Lisalouw - good luck with scan - lumpy and a bit tender is the new normal for me, even a year after my Mx. Rads does a lot of damage. It's not the easy ride they tell you it is. The tissue around my Mx became inflamed and hard and has stayed that way. Hopefully you have nothing to worry about.
Good news Maire. Get the lid on the box. You can sit on it and sing loudly so it can't talk to you.
Hello again H144 (how many more of you are lurking about? Say hello). Hope the MRI was OK. Definitely a good idea to pop the diazepam. I had a couple, which lasted for 45 minutes, but 90 minutes? Eeek. All in one go? I think I would prefer that, cos if they brought me out, I would not want to go back in. Can I ask about the calcium - I am quite worried about my bone density cos of the instant menopause they gave me. My Mum and her sisters all have osteoporosis and I was promised a bone density scan, but it got forgotten. I have heard I should have had a mini one before they started messing about to establish a base line, but that ship has sailed. Going to ask my Onc next month, but, who put you on it and why and how much?
Mandy - hope my ramblings did not offend you. I am trying to come to terms with being seriously lop sided, but we all need to do it our own way. Hope you OK.
QD - meant to add - well done to your 6th formers for talking about end of life care. Sometimes I get a bit overwhelmed by all the pink positivism. I hope I never need it, but I think it is not right to try and ignore those of us who get a stage 4 diagnosis because we are scared of it and it is not so good for fund raising. Great to have hope, but also realism. Well done them and you. x
Good luck with the MRI. I've had a couple: one to the brain for research years ago. I was shaking when I came out. I knew what to expect when I had an MRI of my breasts recently and found it tolerable. I think diazepam is a good idea. I'm sure it will help you relax.
QD - the only personal experience I have of Macmillan is using their helpline when I was very down and emotional. It really helped to talk to someone who understood and could calm me down. A woman I met whilst having rads was diagnosed with bowel cancer just after her husband left her and 3 small children. Macmillan helped her sort out her financial position and the benefits to which she was entitlted. I know she was extremely grateful to them as she wouldn't have been able to do this herself. I had a full ANC and today and yesterday the top of my arm has felt tight and under my arm has been sore and aching. I only finished rad son 2 Sept so I put it down to that. I would phone your BCN
I haven't posted on this thread for a long time but I have been reading with interest. I am a bit behind everyone else as I've just finished rads - which is why I couldn't try to make it to the meet up at Milton Keynes which sounded really good. I am now on Letrozole for 5 years and the calcium tablets for my bones. The hormone tablets are making my joints very stiff but no hot flushes (yet!). My hair is growing back quite well except it's grey with a few dark bits - I look like a badger! It's also wavy and it was dead straight before.
I was hoping that I had finished being messed about with for a bit but I had to see a neurologist who wants me to have 4 different MRI scans. The scans are all at one appointment tomorrow lasting 90 minutes. I have had a MRI before and I then realised how clausatrophobic I am - it was horrendous. I was due to have another one this time last year (before the cancer diagnosis) but I cancelled the appointment twice and didn't go because I couldn't face it even though I know it's an irrational fear. I have been to the GP and got some Diazepam - I hope it works!
Best wishes to everyone
Cressida-chest issues seem to be resolving and my muga and ecg seem to be fine. So it's back onto Herceptin again-which is a relief. Also had hip x ray. Apparently there is a 'bone island' which they are not at all concerned about but am getting a bone scan just to make 100% sure. Of course I googled this and am mildly worried it'll turn out to be something horrible but am going to try to put that worry into that box of yours and keep the lid firmly shut!
Maire - how did you get on with the cardiologist?
Hello to Lisalouw, Shellebelle, Mandy and Sarah - nice to see you popping in.
Sarah - I saw your other post about the secondaries FB group - if you go to the public page of YBCN and send a (private) message giving the basics of your situation they will join you up and they have a secondaries group which I believe is very active. A friend of mine joined and she says the support is really good. You have to join YBCN first, which means you have to be under national screening age (47).
Lisalouw - I too worked for the NHS and don't want to go back. I keep thinking that nothing ever gets done, everyone just talks and has meetings and plays politics whilst the service users just wait and wait. I can't really be bothered with wasting any of my precious time, so I need to find something else - any ideas?
Mandy - At the moment I don't think I am going to bother with recon. Wild horses would have trouble getting me into an NHS ward for an elective procedure. I am going to embrace having one f cup boob. I am looking forward to discussing recon with my surgeon from a feminist point of view - something about trying to "normalise" me, and how that reinforces the stereotype of women that we are only what we look like/appear and the socio-cultural expectations about femininity/sexuality, also how the emphasis on the cosmetic after Mx suggests that appearance is all that we need to address, as that is all that matters if you are female. I think I am trying to say that I prefer to adjust my head rather than my body.
QD - Macmillan have been great in my experience.
I have never claimed benefits in my life, but I was made redundant shortly before my diagnosis and only had casual work at the time. I have a lot of experience claiming benefits for other people, but did not want to fight my own fight whilst having chemo and a Macmillan benefits advisor came to my house within a week of being asked and got on the phone to the DWP and sorted it all out for me. She then came back when the forms arrived and filled them in. She also filled in DLA forms (which I would not have done) and I got ESA, DLA and a blue badge. She was fantastic and was really trying to help - not just one of those people who are just trying to do the minimum - she clearly wanted to actually make things better if she could.
I also saw a Macmillan specialist psychotherapist, who is the reason I have any sanity at all today. I had a difficult year before I got cancer, so I was not in good shape for the nightmare that is cancer treatment. She has really helped me to work through some serious stuff. Having specialist knowledge about cancer is very important - it is more than "just" counseling that is needed. Unfortunately the psychotherapy service has now been taken over by the NHS mental health trust, so I expect that the service will go downhill and become heavily rationed. I have been seeing her for over a year, and still have a couple of sessions before I get discharged.
PS - your comment "only one of us has died" made me p*ss myself laughing for some reason. Maybe I am not taking this cancer stuff seriously anymore, but it reminded me of the The Day Today sketch when the security guard lists all the years that no-one died in the swimming pool. Only in 1980 did someone die. There was an incident with a pigeon later, but no-one died. Look it up on YouTube. I am not sure I am doing myself and favours here regarding my earlier comment about my sanity.
Just popping in for a quick update after the new forum launch.
Cressida, I like your philosophy. It might be a little harder for me to apply, with 6 monthly CT scans, as I had secondaries, but I might be able to choose my reality for say, 4 month blocks!
Cybele, good for you for sticking with Tamoxifen. I l too found the nausea wore off after a month or two. I still find the flushes and sweats annoying, but not as intolerable as they were in the hot summer.
I believe in taking it (although appreciate my diagnosis is at a very different stage). A friend of a friend had grade 3 bc with traces in several nodes 7 years ago in her late 30s. She had mastectomy, chemo, a year of Herceptin treatment & took Tam for 5 years. Unfortunately she was unlucky and her bc came back just after the 5 year all clear. It spread quickly to multiple secondary sites. She's back on Herceptin and that's holding those tumours stable. The point is, she's convinced that it was the Tamoxifen controlling her pre-menopausal oestrogen, that kept the cancer from re-growing sooner.
I don't mean to scaremonger, she's obviously one of the unlucky few. But I find it helps to remember why we're taking the Tamoxifen - to stop our oestrogen fuelling any more problems! I hope the nausea gets better soon. Good luck with it.
QD, Macmillan offered me free counselling sessions, and then, as they had a waiting list to start, referred me to a local cancer charity with no wait list. It's helped me work through the issues with a trained counsellor who has crucial experience of dealing with people with cancer.
I'm making a staggered return to work in October. Feeling pretty unsure about it, especially with next scans due around the same time. But my boss & I have figured out a plan to second me into a more junior, project based role for 6 months, so I can make a gentler start. Will see how it goes, no idea yet if it's viable to do my old job - or even a good idea to try, given secondaries/prognosis etc. But at least it gives me the chance to avoid making a permanent decision on it for now and I keep my Bupa cover in place! (I may have kept quiet about that luxury until now... been reading about various treatments for secondaries that NICE is turning down for funding and want to keep options as open as possible for future treatments I might need...)
Best wishes to you all... Sarah.x
glad you had a good hol Cress
has anyone else had a full axilliary clearance? my arm feels really tight but its not swollen or anything. i hope its not lymphdeema
Glad to here you had a good, refreshing holiday Cressida.
Interesting about the Mammo: that makes 3 of us on this thread whose tumours did not show on mammogram!
Way to go Cress. Like the way you are thinking. You've said more or less the same as me only in a different way. i.e. Cancer has gone, all is well, until it is proved otherwise. This method does help you to get on with your life.
As for the meaningless mammo. Mine too was clear and tumour was revealed on ultra sound scan originally so really a clear mammo stands for nothing. I'm going to ask for an ultra sound scan.
You sound as if your holiday break has really done you some good.
Back from the lakes. It rained. However, I made myself walk and climb waterfalls. It hurt and it took a long time, but I feel so much better for it. Now I can walk much further and faster. The pain in my back is not so bad. I have one leg that aches. The whole leg, not just the joints. Could get cancer paranoia about it, but somehow have managed not to.
Am sticking with the Schrodinger's cat idea I had a while age. Cancer was a random event, now all realities exist (dying of cancer through to never hearing from it again) at once. None of it matters until you open the box and make it real. Investigations and scans can open the box and it could have horrors in it. Whilst the lid is firmly on I can choose my reality. I choose no cancer. I apologise to any proper physicists.
Nice to see a few people reappearing on the thread. Sorry I have not replyed to posts individually. Will try to do a bit of that later.
Mammo letter said this:
I am pleased to comfirm that your recent mammogram has revealed nothing of concern.
That was literally all it said. I know that my last mammo was clear despite having a 10cm tumour, so really the mammo is meaningless, but it is better than them finding something.
Now I have the appiontment with the thyroid specialist (finally) on Thursday, and then my oncologist and surgeon in a few weeks. if I can pass all those tests, I guess it really is time to get on with my life.
Hope you are all well.
I booked my annual mammogram. It's next week! Can't believe it has been a year. I still feel so tired and battered. Does anyone else feel really shattered? I'm planning on going back to work in October on a phased return. I think it Then I'm hoping for my reconstruction which I'm having in Leeds in November so will have another 6 weeks off!
It's a lovely day and I'm off to try and shake off my feeling sorry for self!!! I should be pleased that it's nearly all over.
Big hugs to all .........