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One year on

51 REPLIES 51
Lane
Member

Re: One year on

Thats good to hear , im just over a year now and just try not to think about it,its hard but i do try .
karapace
Member

Re: One year on

Hello yes I have been here with the gastro stuff. I am a year on and around the time of my first annual check up had a bit of a melt down! My symptoms were acid reflux which kept me awake, constant nausea and weight loss. I was prescribed omeprazole and eventually the reflux stopped, but the nausea continues though I can now eat and sleep. I had blood tests, abdo ultraound, faecal occult test - all normal. Finally I had an endoscopy for which I had to stop taking the omeprazole (hurrah I hate it!). The endoscopy also appears normal - just awaiting biopsy results but dont expect anything but normal there. Feel silly but you have to follow up the symptoms. The endoscopy wasn't too awful an experience. I feel grateful to have so many 'normal' things going on and somehow amazed that I am actually beginning to feel more 'normal' now! It has been a tough year but I am coming out the other end now. My mammogram results took six weeks to arrive! But yay its normal! 

Lane
Member

Re: One year on

Hi I had my first mammogram a few weeks ago and all was good and I still worry , sometimes when I'm feeling good and happy it just suddenly comes back to haunt me it's terrible I suppose it will always be in the back of my mind and its all the what ifs , xx
Lane
Member

Re: One year on

 
Lane
Member

Re: One year on

Wouldn't it be so nice to all met up and be able to a face to the name now we have finished treatment
Jill1998
Community Champion

Re: One year on

It totally took me back to the waiting for diagnosis feelings too Aggie ,I think it is normal but not nice !!Like Rubycat I am hoping to remain a bit calmer for my second one coming up in June .
Aggielou
Member

Re: One year on

Thanks Rubycat - I don't think I was prepared that I would feel this anxious. Thought I would just go along for the Mammogram on my day off work and then see the oncologist 3 weeks later. Just something I would fit into my diary. These feelings took me by surprise - it's like going back to the "waiting for diagnosis" feelings again. Xx

rubycat
Member

Re: One year on

Hello Aggie, certainly relate to your anxiety feelings, and do think that we don't really know how or why our bodies react the way they do, and I think anxiety can present itself in all sorts of physical ways.  Coming up to my second mammo now, but last year was a complete wreck before the mammo, and then waiting for the results (ok, phew), but it certainly took a toll.  I am going to try and listen to myself this time, and calm down, humph, well, at least I can try.  I think it's great that your doc is trying to put your mind at ease, it certainly helps that you can talk to someone.  Everybody here is also good to talk to, we understand how you feel, so keep posting. Sending hugs. Cat Happyxxx

Aggielou
Member

Re: One year on

Hi - I posted last week about my first mammogram following WLE last Feb. My oncology appt is 28Feb so that is when I will hear results. I do not feel that I am consciously worrying about it BUT - I feel generally unwell a lot of the time recently though , oddly , one day I can feel ok and next awful again. Am still going to work but some of the time I feel lightheaded, can't concentrate and have indigestion type pain and back ache. Even today - and it's the weekend I feel very on edge . Went to GP on Mon - he gave me something for stomach acid and examined me .Did not seem worried but has ordered ultrasound scan of abdo ( mainly to try and put me at ease-- I hope) 

Anyone here think this could be suppressed anxiety about appt causing physical symptoms? Has it happened to anyone else? When I feel ok things go to back of my mind but when it's bad( particularly at work) I think I have got a another cancer and it's really bad. I don't want to be like this.!!

Cybele
Member

Re: One year on

Jill, Pam and Lovewine - thank you so much for your responses, which were much appreciated, and made me feel less of an ungrateful neurotic freak. x

 

I've also been much helped in the last couple of days by reading a book suggested somewhere on this thread (sorry, I've lost track of who recommended it), 'Emotional Support Through Breast Cancer' by Cordelia Galgut, available second-hand on amazon for a mere 1p

 

https://www.amazon.co.uk/gp/product/1846199360/ref=oh_aui_detailpage_o06_s00?ie=UTF8&psc=1.

 

It's a very short book, written by a psychologist who has herself had breast cancer, and is very helpful and reassuring about the long term emotional effects of going through breast cancer treatment.

It stresses the enormous psychological shock of diagnosis, and the massive physical assault on the body of going through all the different treatments, with concomitant mental effects, and suggests that we should not beat ourselves up for not being 'over it', but rather acknowledge that we are still living with its effects, and be kinder to ourselves when we go through these intermittent spells of depression, acute fear of recurrence, etc.

 

As Jill says, we have to find a way of stopping it spoiling our lives. I'm now accepting that occasionally, when I'm feeling particularly vulnerable, I will fall into what Pam accurately calls 'the breast cancer abyss',

and that this is not a massive personal failure in moving on with my life, it's just normal after what we've been through. And that it will pass..

 

I never really liked the cancer 'battle' metaphors, but I love my life, and am grateful for it, and I'm going to try really hard not to let breast cancer spoil any more of it than it already has!

 

So, onwards and upwards- and thank you again for your support xx

ann-m
Community Champion

Re: One year on

No, I'm in Kent, Aggie.
I can see what they're saying about the new policy, but it must be recent, otherwise you should have been informed of this beforehand. It looks like the radiologist needs to brush up on some communication skills!
ann x

ann x
Aggielou
Member

Re: One year on

thanks Ann. Did you have your mammogram at Birmingham womens hospital too? The policy is theirs - not country- wide. 

ann-m
Community Champion

Re: One year on

Hi Aggielou,

Well, if it's a new policy, it's obviously has not been communicated to the teams & it's the last thing you need is to be put into the middle of it when it's not your problem. It maybe worth feeding this back to the hospital Trust.

Like you, I've just had the first yearly mammo, I got an appointment then had to change it as we were out of the country, so it was just under the year. No mention of a change of policy.

Sorry to hear you did not have a good experience, but as you say, it has been done. The radiographer who did mine was lovely & said the first annual mammo tends to be the worst in terms of anxiety, but that this usually gets better for women in subsequent years.

ann x

Aggielou
Member

Re: One year on

Hi -- I posted a few days ago about my upcoming first mammogram after surgery last Feb. Well ,it was today. I was quite taken aback at how emotional and tearful I felt all morning. Think it was all that surpressed worry. 

 

I got to hospital  was checked in and I changed into a gown then radiographer came and told me that I couldn't have mammogram cos policy was that first mammogram is 18 months after surgery and then subsequent ones are annual. I did not want to hear that!   - the consultant radiologist came to explain that it was policy. She was quite direct and not at all empathetic. They said oncologist should not have made referral for  12 months mammogram. 

I explained that I had come in response to an appointment letter ,taken time off work and that it was an emotional issue too , psyching myself up to it. Consultant went to speak to surgeon who had done my op and he said it was fine to have it. She seemed miffed to be overridden and I eventually had the mammogram. It shouldn't have to be so difficult!! Also, I know a lot of areas in the UK do have first mammogram at 12 months. I live in Birmingham and this was Breast unit at Birmingham womens hospital.

Well at least it's over. 

To Add insult to injury  --,was on my way to my evening yoga class and clipped a parked car mirror with mine on a busy road. Caused a tiny scuff mark but this led to exchange of details and a claim will go in!!

Missed yoga too! Great !

Lovewine
Member

Re: One year on

Hello Cybele, i am from April 2014 and also remember following your blog too, i could have written your post as it's exactly how i feel , i cant even book a holiday too far away in case i cant go due to the cancer returning, its very difficult to move on, its 3 years this week since my diagnosis and i feel just as anxious as i did back then.
Pammyx
Member

Re: One year on

Hello Cybele

I am from the March 2013 thread so just behind you, I followed your blog during chemotherapy and found it very helpful especially the humour. 

I identify totally with your feelings I am much the same, I sink into the breast cancer abyss on a regular basis, people have told me that you feel better over time but I am finding the reverse, as you say there is a sniper out there that will eventually get me. I tend to cope by living in short time frames never plan too far ahead and that seems to work for me. However, I sometimes get down in the dumps, and it is certainly made no better by these appts, sitting in the waiting room for the mammogramme feeling like jelly and looking at all the other ladies there who you know are feeling the same. Nice to hear everybody's thoughts and a comfort to know that others feel the same. Oh well onward and upward as they say. Love to you all Pamxx

Jill1998
Community Champion

Re: One year on

Hi C,I don't think the fear will ever go away ,we just have to find a way to stop it spoiling our lives .Yes, it can come back mant years after diagnosis ,but in the vast majority of cases it doesn't and you are more likely to get run over by a bus .Its not pathetic to feel like you do this is a very hard thing to deal with ,have you managed to go on a "moving forward course" run by BCC they seem to be very helpful .Jill.
Cybele
Member

Re: One year on

I'm four and half years since diagnosis, just had a clear mammogram, have been getting on with my life with no real problems except that Letrozole seems to have catapaulted me into old age.

 

Yet I'm suddenly feeling overwhelmed by it all again - all the things that someone (Leigh?)said below

 

"Also the puzzlement - I can't seem to find a place in my brain for what happened - was it a dream? Why is life normal and I'm not? And frighteningly, what's the point."

 

I've just had flu and although I KNOW that theweakness, the lingering cough and pains in my side are highly unlikely to be evidence of lung mets, yet again I keep thinking that the cancer will come back sooner or later, so why not now? In fact, my prognosis is good and i may well live long enough to die of something else, but every time I have the slightest twinge or ailment I become convinced for several days that this is it, the cancer is back, and this time it's The End.. I know this is pathetic, that i have been one of the lucky ones so far, and I'm all about making the most of every day and enjoying life, but I can't control where my mind goes, all too frequently, and it's driving me bonkers.

 

One thing that really doesn't help is the amount of obituaries I have read in the last year of women whose

breast cancer has come back well after the five year point, which seems to be meaningless. If you survive 5 years it doesn't mean it's not going to come back, it just means that you've been fortunate enough to have survived 5 years.

 

And I read somewhere recently that never mind the chemo, the radiotherapy and the drugs, cancer cells can just go dormant in your body and wake up again any time they feel like it. The writer Margaret Forster, who died recently, had breast cancer 40 years ago, and eventually it came back to claim her.

 

I'm not even that bothered about dying, weirdly.  We all have to die sonmetime, and we all have to live with uncertainty , of many different kinds, all the time.

 

But it's the feeling that the sword of Damocles is hanging over my head all the time, that seems to be driving me crazy.

 

I have so much to be grateful for in my life, but I feel all the time like a sniper has me in their sights, and is going to pull the trigger any minute now.

 

Sorry, now I'm mixing my metaphors. And sorry for being so doomy, but I'm baffled as to why after more than four years, the mental effects of this are STILL proving so difficult to deal with.

 

Ah well, I need to get a grip. This is just the new normal, in fact the not so new normal.

I really need to accept that this is always how it is going to be, and stop wasting what time I've got left

by brooding about how little time i might have left.

 

Right, now I'm going to go for a walk in the sunshine and look at the crocuses.

Jill1998
Community Champion

Re: One year on

Hi Gill,it put me in a very weird place mentally and I don't think it's unusual ,I think disconnected is a good description ,it was like life was put on hold for a while then when I got the results someone pressed play again.
Gillw
Member

Re: One year on

I have had my first annual checkup and mammogram and waiting the results. As I haven't been called back, am hoping it was ok. But haven't had my letter yet.
I have experienced all kinds of weird side effects from the Letrozole I have to take now - really bad joint and leg pain with cramps and spasms. Since having the checkup, I have felt sad and disconnected from my normal life and have felt almost as if I am unfamiliar with normal things. is this anxiety or what do you think? I didn't expect to feel anything other than relief after what seemed to be a satisfactory examination. Anyone else experienced odd feelings after the first checkup?
Jill1998
Community Champion

Re: One year on

Hi Angie I still have some discomfort 18 months on post lumpectomy and it gets worse if I have done a lot physically , it has improved since my first post treatment mammogram last June however .I was thinking of asking if I could have yearly mammograms too ,3 years seems like a long time .I found the first mammogram post treatment really hard especially the waiting for the results ,felt physically sick when the letter came through the door ,felt I had to put things on hold in my life for a while till I got the all clear.Good luck with your appointment .Jill
ann-m
Community Champion

Re: One year on

hi Aggielou,
On discharging me, my oncologist did say that yearly mammos could be requested after 5 years, if I preferred. It maybe an idea to check with your team.
ann x
Aggielou
Member

Re: One year on

Hello - it's a long time since I posted anything but I often dip into the forum for advice and tips from other people's experiences. I had DCIS which was large and high grade - had surgery 4 Feb last year followed by radiotherapy. I am 58 .All the feelings people are describing on this thread resonate with me - especially going through patches of feeling low. I think that , like many, I just got on with my treatment at the time but didn't really acknowledge it.  Sooner or later you have to face it and I think that's been happening to me now as I came up to a year since diagnosis.  Also

my place of work doesn't make it easy to put it to back of my mind - I am a palliative care nurse working in a hospice . Obviously , I don't talk to patients about my diagnosis but It often crosses my mind that we have some things in common. I have my first mammogram since treatment , coming up on Weds with oncology appt end of Feb. Of course,I am worried about it and seem to have developed pains in my arm this week !  

Do any of you ladies who have had lumpectomies  still have pains and discomfort  all this time on ?. Oncologist and BC nurses say it is normal for some women. I am still wary about enthusiastic hugs from my toddler granddaughter and quite protective of that area.  Wonder will it always be like that 

I was told I would  have annual mammograms for 5, years then back on normal 3 yearly. I would prefer annual,for 10 years .

Anyway, am rambling now.  Goodnight   X

JoKayBee
Member

Re: One year on

Hello - just wanted to say that is possible the most useful and calming article I have read since my diagnosis in June 2016, so thank you for that 🙂

I think we are all ging to struggle to some extent post diagnosis/surgery/treatment - and possibly will always face some days that are darker than others, but this article really addressed some of the things that have been racing around in my head recently.

 

best wishes to you

Leigh446
Member

Re: One year on

Thank you Anne.

calmer now after a miserable day. What was that weather all about?! I agree with the other lady that said when it hits you and you're down, you are really down. 

Sure it'll all be fine- now I've climbed back onto firmer mental ground!

ann-m
Community Champion

Re: One year on

hi Leigh,
I've just had my first yearly, the radiographer was lovely & very reassuring.
I found as it approached that it did play on my mind again & my treatment was more straightfoward as I did not need chemo.
Anniversaries can be so difficult.
I found it helpful to remind myself that following treatment there would now be far less of a risk as it had now been dealt with.
Do take care
ann x
Leigh446
Member

Re: One year on

Hi ladies

my first yearly is in March and already getting nervous!

im still getting days when I can't cope, the anxiety is awful. Also the puzzlement - I can't seem to find a place in my brain for what happened - was it a dream? Why is life normal and I'm not? And frighteningly, what's the point.

ive done a mindful course and am trying to cycle daily but sometimes - every couple of days just get so overwhelmed. It's exhausting and of course no one else wants to know, or wants it swept away, after all it was a year ago.

I'm really worried because I've been hitting the wine heavily to try and numb the panic. Help!

jillybee
Member

Re: One year on

We are hard on ourselves .Trouble is,when cleared of cancer we are no longer looked after.While under the umberella of care,appointments,etc,you are looked after...then it all goes.

Tili
Member

Re: One year on

In a strange way so happy to read all your notes, makes me feel very very normal, after having 4 operations and 5 hospital stays over the 16 month with lots of ups and downs.

 

l am trying very hard to put the lid on the box and move on, however not easy it ready helps to read about all the lovely ladies out there.

 

GOOD LUCK to each and every one Happy Christmas and a big thank you to all the wonderful people on this site we couldn't have done it without you.

 

hugs Tili xx

Moijan
Member

Re: One year on

Hi ladies, how are you feeling now? Have things setyled down or are you still feeling low?

 

Moijanxx

Jill1998
Community Champion

Re: One year on

Ps I am due my first post treatment mammogram in a few weeks too.Not good ,brings back loads of very unpleasant memories .
Jill1998
Community Champion

Re: One year on

I think this thing is like grief,it hits you in waves and at certain key times (sometimes when you are least expecting it) it floors you.Cancer is an enormous thing to get your head around and having it hanging in the background indefinitely is really hard.We are all bound to have low times and shouldn't beat ourselves up for feeling that way sometimes .Hope you feel better soon, we should get treats on the NHS to cheer us up(better than Tamoxifen etc!!)
juliet1967
Member

Re: One year on

Hi, I feel very low too, I was diagnosed with the same. Awaiting my follow up mammogram, feeling very anxious. I don't know how to move on either I assume this is a normal feeling, I do walk this does help me . But when i get a low day they're low. x
Joo64
Member

Re: One year on

I was diagnosed with DCIS a year ago. I had a mx with implant reconstruction, nipple reconstruction and Aerola tattoo. I also had a reduction on the other side to make me symmetrical. I considered myself lucky as it was found early and I didn't need any further treatment. I was really positive throughout my treatment. Now one year on, I had my first mammogram and ultrasound on my remaining breast today. Results were clear with no problems yet I feel so sad and empty. Actually sadder than when I was diagnosed. Think I'm still in denial that it ever happened. Just don't know how to move on, feel so very very low. 

kate48
Member

Re: One year on

Hi all
I just found this thread and found it really reassuring. I was picked up in a pilot of extending routine mammograms to women between 47 & 50 as having DCIS. I consider myself to be lucky as although I had to have a mx I didn't need any further treatment. My mx was last february and was followed up with surgery in September to replace my tissue expander with a permanent implant. I am booked in for my nipple reconstruction later this month. I had the results of my 1 year mammogram a few weeks ago and like you all found it a very anxious time. I will be 50 in May and am finding it a very strange time. People want to make a big fuss of it but I feel it makes me confront my mortality and to make a big deal of it feels like it counters my current philosophy of valuing every single day and taking great pleasure in what I do have. It feels mad to have such a violent reaction to a 50 th birthday!! Like others in the chain I take much more care of myself than before and eat better and exercise more. Physically I feel able to do just about everything again and have just come back from a skiing holiday where I could do everything I wanted to do. In that I have taken great pleasure and satisfaction. Life does return to normal but the punctuation of medical appts are always going to be unwelcome reminders of what we have experienced and our vulnerability. My sister is 6 years post bowel cancer and still feels the same.
Thanks for sharing. It makes me feel normal and not neurotic
K xxx
Butterfly318
Member

Re: One year on

Dear Natalie

 

I am almost 54 and was diagnosed at 50.  On a good day i feel i am one of the lucky ones and do everything i can to remain well.  I do think some of my friends think i am ok.  I do not expect them to understand the reality and i hope they never do know how we feel.  I have done everything Cognative Analytical Therapy, Cognitive Behavioural Therapy you name it i've done it....in an attempt to understand, think differently and move on.

 

For me it is only with the longer i go with annual mammograms and NED results that i gain confidence that i will be ok..... The reality is that i am 3.1/2 years on from diagnosis and i am ok,  I had a further mammogram last week and have to wait two weeks for the OK.

 

On a day to day basis i try to appreciate the small things and i do Mindfulness (available in Primary Care as an 8 week group session) alternatively you can purchase Danny Penman & Vidyemala Burch books with CD.  Also Mindfulness colouring, Waterstones have some really good books.  This is also something you can do with you children,  as adults we forget what a good distraction colouring in is...

 

I know i am further on than you, had more years clear but recovery and regaining confidence in bodies, that i guess we feel let us down to some extent, is a long process.  BCC have a moving forward programme which was really helpful and i hope as you remain well and can distract yourself and as time goes you will gain confidence again. 

 

Take Care  Butterfly x    

NatalieStavers
Member

Re: One year on

Hi I 37 got diagnosed at 36 with breast cancer had chemo and radiotherapy I have 3 girls all under 13 terrified it will come back just had s mammogram and everything ok but still scared it will come back
NatalieStavers
Member

Re: One year on

 
eileen728
Member

Re: One year on

Thanks for that Flora. That's what is so good about this forum. However we are feeling there will always be someone who understands and no-one will ever dismiss how we feel xxxx

feistyflora
Member

Re: One year on

Hi Eileen and Pandorra

 

Rest assured, I do understand you both when you say you feel down. I have always been very much a glass-half-full sort of a person but I also get days like this and then I feel terribly guilty. I have found that it takes a lot of time to adjust but unfortunately other people seem expect us to just snap back to how we were before and continue as normal but of course our 'normal' has changed. I find that it helps to remind myself that I am one of the lucky ones. If people get impatient and lack understanding I just silently think to myself "one day you may get cancer because it seems so rampant at the moment - let's see how you will deal with it". Having cancer is no picnic.

eileen728
Member

Re: One year on

Hi Pandorra - and everyone else. I do know what you mean. After mammogram results hugely relieved and happy for a couple of days. Then arm started hurting again and I was imagining all sorts though I am sure similar issues before BC I would have just ignored. I keep telling myself it WILL get better. Not yet managed a whole day without thinking about it in some way BUT I am managing parts of the day now so i am hopeful that it will improve and I will stop fretting about every little thing. And spring is on the way. Birds chirping and buds coming out - though this winter has been so strange the buds have been out for a while.Love to everyone and Happy Easter! xx

pandorra1
Member

Re: One year on

Why, oh why do we feel like this.  Clear mammogram after 1 year, great news, and then..... all those thoughts run through your mind.  Like many, I have good and bad days and I don't think these horrid thoughts will ever leave us. So, we have to try and train our minds the best we can and at least we can meet here on this fantastic site and pour out our hearts.  As they say, it's good to talk. Sending masses of xxxxxxxxxxxx and hugs, 

suedehead
Member

Re: One year on

I'm exactly the same! Had mastectomy,chemo and radiotherapy last year. Had my first check up an mammogram last week and all was ok. But..... Feel so down. Should be feeling on top of the world  so that makes me feel worse. Can't imagine ever feeling good again. I guess we just have to learn to live like this xxx

 

eileen728
Member

Re: One year on

Got result back after 13 days - all fine but I got soooo anxious beforehand, Think they need to find a quicker way and think about those of us who have felt ambushed by our bodies as you say. What annoyed me was report  was written on Friday not posted until Monday - second class - so didn't get it until Wednesday. So lots of un-necessary extra days of worrying. My treatment has al been fine but communication rubbish. Saw oncologist for sign off she went through everything - or so I thought - and then when I got home ON THE SAME day - there was a letter waiting signed by the same consultant saying my DEXA scan showed osteoporosis!!! 

Bibi44
Member

Re: One year on

Val Hope you have your results now. Why does it take soooo long?!

ValS1
Member

Re: One year on

Thanks I appreciate your reply, I'm still waiting for the mammogram result letter its 3 wks now, Inhave breast clinic appt next wk so wondering whether I will get result at the clinic. Best wishes.
ValS1
Member

Re: One year on

Many thanks x
ValS1
Member

Re: One year on

Thanks for your reply, catokitty, I hope all continues to go well for you. The oncologist referred to me as low risk when I saw her in the Summer and I know that mine was caught early and i was fortunate there was no spread. I suppose its that we don't feel unwell when we get a BC diagnosis and the realisation that you can feel perfectly fit and well and still get a cancer diagnosis is why it erodes confidence in your own body, but its positive that screening caught it and I had surgery and treatment. Not that many years ago the situation would have been different wouldn't it. I am on my ipad far too much in the evenings so its a good suggestion to cut down on screen time before bed. Thanks again. 😊
catokitty
Member

Re: One year on

Thanks for this - it is excellent.  Dr Cordelia Galgut's book is also excellent on worrying about recurrence. It is available on Amazon

Sameoldme
Member

Re: One year on

Hi......this article may be of some help?  I still dip into it when I get wobbly......like now when 4th year post diagnosis follow up mammo and surgeon appt due! Xx

 

http://www.cancercounselling.org.uk/Peter%20Harvey%20-%20After%20the%20Treatment%20Finishes%20then%2...