Hi, I’m Lilac and I’ve been reading and posting regularly on this forum since I was diagnosed last June and have found everyone very supportive and made new friends. I’ve since had surgery, chemo, radiotherapy and am currently on Herceptin and Tamoxifen.
I had been hoping to start work again after radiotherapy (I’m studying with Open University to be a language teacher) but it’s proved impossible so far. Memory and concentration are gone, I get tired very quickly and the SEs of the drugs are greater than I had anticipated so that is still on hold, frustratingly.
Just finding everything a struggle right now and getting worked up about my 1st year mammo - no date yet. I’ve lost a stone and a half so far in the past year and worried it is something sinister - blood checks for thyroid function and diabetes were clear. I’m usually a positive person, so the black days are frightening. Would like to hear from people who’ve been through this and come out the other side - can’t see the light at the end of the tunnel right now.
Hi Lilac I think this stage is a really, really tough time. End of active treatment and if you were only dx last June 2010 then it is still less than a year. Please do not be hard on yourself, you have been through a lot both physically and emotionally. I think at this stage too friends and family think it is all over and now it’s back to normal. But what is normal? It ain’t what it used to be .I think this is really early days to be expecting /or be expected to ‘be over it’.
There is a BCC publication Moving Forwards- for people living with and beyond breast cancer, which I am finding helpful. Also there was a course with a similar name I went on it last year see web-site. Also the help line is exactly that it helped me get my thoughts back into some sort of perspective.
Another thing I found helpful was a 3 day course at the Penny Brohn centre in Bristol. I went in March. Hope this helps a little. And yes the mammo anniversary is a tricky time
Have you been on holiday yet? I think that is helpful in aiding recovery and convalescence. Another thing I found helpful was an article on the cancercounsellingtrust.org.uk. It is written by Dr Peter Harvey and there are several parts covering the range of ‘After treatment finishes’.
Sorry hope I have not bombarded you too much just some ideas.
Take care Jxx
This resource discusses a range of topics that may be relevant to you after treatment for primary breast cancer, from dealing with fatigue and further support, to help you move forward with more confidence.
Also, if you would like to talk things through please do give the BCC helpline a call on 0808 800 6000 and the lines are open Monday to Friday 9 to 5pm and Saturday 9 to 2pm.
I was dx last April so can sympathise with you on how you are feeling. As Libby says, it is tough and your emotions are all over the place. If you are feeling stressed out by trying to study, then i would put the OU on the back burner for the moment as it’s hard work even when you are feeling ok - i did my degree with OU years ago.
I didn’t have chemo or drugs but still shattered and forgetful which i put down to the radiotherapy. I lost over 1/2 stone and had my blood checked because i was sooo tired but all ok. I think we go into worry overdrive. I was also very stressed at work but have finally got it into my head that they really don’t care, so i have stopped worrying so much about work and it’s made a big difference.
Best things that have helped me are this site, calling the helpline,getting some exercise and trying some meditation to try and change the way i think about things i.e. recognise how i’m feeling and try to change from feeling down to feeling ok. I would say it’s only in the last month or so i’ve started to feel as if the stress is more manageable. So give yourself a break and just try and let your body and mind recover - maybe a holiday could help you relax a bit?
Take care. x
Thanks, fitgirl. I was thinking the budget was too tight for a holiday this year, but I might see if I can get a last minute bargain. Might be just what’s needed.
Lilac x
hello lilac … i know exactly how your feeling. i was diagnosed april 2010 and had 2 WLE and radiotherapy am now on aromasin for 5 yrs . i am also comeing up to my first mammogram its 2 weeks away , im already frantic and feel lonely and scared… its a never ending nightmare …its so hard to stay possitive, all thats in my mind is what ifs … ive put 2 stone on , but a friend with the same diagnosis as us has lost loads of weight so i wouldent worry about that…i so hope we both have happy outcomes x
Hi Angiem
Yes, I hope so too. Waiting and not knowing seem to use up so much energy. Distracted myself by using up a voucher I got for my birthday and having a spray tan. At least I LOOK healthier now - and I match my ginger tabby cat!
Lilac x
Angiem - how did you get on? Hope it went well for you.
I booked a late deal for the end of August - great advice - that has given us something to look forward to.
Mammo tomorrow but fortunately I’m feeling calmer now. Must already have done all my freaking out. I’ll be seeing my surgeon for the first time since my second op to increase margins back last June. That was a very surreal experience as it was done under local anaesthetic and they wouldn’t give me anything to calm me down. He asked the nurse to pass him a scalpel then stood there with it in his hand and asked me what was going on in my home town these days. I had an answer in my head and opened my mouth but no words would come out. Instead I felt tears trickling down my cheeks. The nurse said, “I don’t think she wants to talk to you.” And he answered, “That’s just the effect I have on women!” Can still barely believe that actually happened!
Lilac, that’s atrocious, no wonder it’s still going round your head!
Good luck for tomorrow. Is there any way you can kick up lots of stink about getting your results quickly, even if you have to phone to get the results. I don’t think I could bear waiting for an envelope popping through the door.
Best wishes, and I have to say you look fab in your avatar, even if you don’t always feel it.
Hi Lilac sweetie omg im shocked what you went through during your 2nd op but pleased your feeling more calm I can understand everything everyone has said & I know im going to have a meltdown when im due back at the breast clinic in November & that will just be 6 months God knows how I’ll be on my yearly one ? I don’t even want to think about that … it seems so far away (diag this April) yet like others have said a year is not far YET we have been through so much c*ap during that year that it just brings all the memories back.
Sending you lots of love & hope you find the strength & comfort you need to help you smile & feel a bit more settled
Big Hugs
Mekala x
SGL and mekalar - thank you both for your kind thoughts. Funnily enough, the only part of that experience that made me cross was not being given any sedative. I had opted for the local anaesthetic because it meant I could have the op sooner and at a hospital much closer to me. Plus I didn’t have to recover from an general anaesthetic a second time. The medical staff were all very friendly, chatty and funny throughout which is possibly why it was so very surreal - not at all like Casualty or ER!
OK, now I really AM cross!!!
First year review yesterday. The surgeon was at the breast clinic but didn’t appear to be seeing anybody. I was seen by a Registrar I’d never met before who was very offhand and impersonal. When he told me I’d get the results of my mammo from my GP ‘in several weeks’, I was astounded. When he saw the look on my face, he said, ‘You weren’t expecting to get them today, were you?’ in a you silly mare tone of voice. Red rag to a bull! I had thought a week max, but but was told in no uncertain terms that I’d have to wait as this was ‘only a review’. He said that this was their system, and that I could ask my GP to contact them sooner. So if I want results more quickly, I have to get my GP to hassle them - what sort of a system is that?!!
The radiographer was more helpful. She explained that the mammos have to be read separately by 2 doctors and if the results didn’t agree, they were read by a third one and this process could take 4 weeks. I should get the results before I go on holiday last week of August, so at least that’s something.
Still cross about the ‘just a review’ comment. I hadn’t realised how much this anniversary (that’s how it feels) would take out of me emotionally. It was a day of looking back with amazement at all I’ve been through - what a rollercoaster of a year!
hi lilac. sorry i did post about my mammo dunno where i posted them tho lol, well i went for the mammo and all appeared well untill the radiologist said , dont get dressed yet i need to check the slides, PANIC SET IN … then she said i need to do your right breast again… NEARLY WEED MYSELF THEN, as this was where the cancer was. i tried to be calm and asked… did you see something … to which she stared at me , then said i need to make sure all of the breast is on the plate, we dont want to miss anything, by now i was in bits, convinced she had found something else, she proceded to stretch by still achy boob on to the plate , twisting and pushing and pulling. by now my mind had gone in to panic overdrive and my boob felt numb , she did what she had to do and said ok you can go now, i was so scared, i asked when i would get the results… half expecting 2 find a message on the answerphone when i got home…she said when do you next see the consultant… this was thursday… and my appointment was the following thursday… she said the results would be back and the consultant would discuss them with me, i was frantic, couldent eat couldent sleep and cried constantly, ( im not usually such a whimp). on the following monday i rang the breast unit in tears and explained how i felt, the bc nurse said the results usually take about 3 weeks, i then went on to say my appointment with the consultant was that thursday, she was so good she said she would go and pull out my mammo and see if she could get the results read in time for my appointment… i arrived for my appt shaking weepy and feeling gutted, i also saw the registar, he was lovely, he examined me throughly, was very kind and careing…he then said your mammo results arnt back yet… haha … i knew they were on the system… because i rang and checked they were the day before…so i said … they are on the system, i rang and checked before i came… to which he smiled and said in that case i will go and get them for you…he came back 10/15 mins later, and hey presto… mammo shows NO CANCER… just lots of scaring… i burst in to hysterical sobs ,i know you should go for appointments with an open mind… but i had got myself in to a terrible state, and i read things that wernt there… i think if you go to your GP they can ring for the results,rather than you waiting for them to arrive by post, hope your feelingless angry today xx angie PS great news about the holiday… we also booked to go away… september cyprus here we come xx
I have clinic appt with Onc end next week & first annual mammo due early October. Have to say the thought of the mammo again is beginning to scare the hell out of me. She did tell me at appt 4 weeks after rads that they try to tell you results on day; but may not be able to if really busy. I told her how freaked I’d be & she did make a few notes. Hopefully telling them you have a whimp on your hands; try to let her know results when mammo done.
Exactly a year today that I had my one-stop clinic following first routine mammo as I was 50. I think I’m feeling this as it is now 12 months (not sure where the year went but glad it has). I had non-invasive DCIS and had been generally positive and counted my lucky stars I had this and no invasive to deal with Im finding the 12 months later bit more difficult & not sure why (probably my age/going thru’ change isn’t helping either).
Thanks Mekalar and simplesr!
Yes I think I found this mammo harder mentally than the first and I think it was because 1st time I really wasn’t expecting bad news even though it wasn’t a routine mammo screening - I had found a lump. But I was totally convinced in my head that I would be told it was benign. Second time around, I knew that it could be me. If only the same thing would work with the Lotto!
but pleased your feeling more calm I can understand everything everyone has said & I know im going to have a meltdown when im due back at the breast clinic in November & that will just be 6 months God knows how I’ll be on my yearly one ? I don’t even want to think about that … it seems so far away (diag this April) yet like others have said a year is not far YET we have been through so much c*ap during that year that it just brings all the memories back.