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Moving forward and getting in with life

23 REPLIES 23
Community Champion

Re: Moving forward and getting in with life

Thankyou once wild, I'll give it go. 

Disappointed that none of the health professionals that I've seen have mentioned anything like this😕

Sue x

Member

Re: Moving forward and getting in with life

Hi Sue C

 

juat reporting back about my experience of taking  cod liver oil in an attempt to walk across the room with some degree of elegance each morning and not like a very old lady. I have taken them for around a fortnight and am definitely less creaky in the mornings and when I have sat too long. It may be that the stiffness would have worn off anyway so can't say for sure it is the cod but I'm sticking with it and hoping for ongoing improvement. Also wonder if there is also a side benefit of improving my hair and nails? Hop so!

Member

Re: Moving forward and getting in with life

Hi Guys,

I just searched the word  remission on this site and came across a discussion from 2011 saying that subsequent clear mamograms are classed as NED, no evidence of disease, nobody seems to use the term remission. When I saw my oncologist and expressed surprise that he didn't want to see me again until April he just said it wasn't a problem since the cancer was all now gone.

I suppose I just want someone to tell me it's never going to happen again, and they just can't do that. So I guess that is the next stage for us learning to live with the uncertainty. 

Are you having a good day? The OH and I are looking after our 10 month old granddaughter while her Mum goes to work for a taster return session for the afternoon prior to returning properly in a few weeks. Considering we are parents of two I feel surprisingly anxious about the resposibility. Gillx Smiley Happy

Community Champion

Re: Moving forward and getting in with life

Hi Ladies

Gill - your comments are so spot on! Totally agree x

Oncewild - Let me know how the cod liver oil works out for you. I'm also willing to try anything. Sooooo stiff and achy all the time. Worked in a sports centre before all this nonsense started and due to go back in a few months. Need to get some sort of fitness back! I was diagnosed last May, from a mammogram a month before. So annoyed when I found out that my follow up had been moved from April to June. Really not prepared to wait that long for a mammogram.

When I asked the oncologist before xmas, do we ever get an all clear, he just said that now I am no different from anyone else and that they only do scans etc if there is anything suspicious that needs looking at. He didn't seem to grasp that having been through chemo and radiotherapy that we need to know whether it worked or not! 

A member of my family, who has also been through this , told me that once you have the surgery and the lump is removed, then you are in remission. This is how I like to look at it. Everything else is simply picking up any stray cells and preventing it from coming back. However, I really want to be able to say that I had bc last year, but don't want to jinks it!

Member

Re: Moving forward and getting in with life

Thanks for the hug Sue. I had chemo (EC and Paclitaxol) before rads. I think I am doing ok on letrozole apart from some irritating hot flushes but I am VERY creaky in the morning or when I have sat for a while. Not sure if it is the letrozole/herceptin/zometa but whatever I feel like a really old lady when I get up. Am now taking cod liver oil capsules just in case they help and am planning to take up Pilates and get back to swimming (in fact my very jazzy aqua knitted knocker arrived today) - who knows what will help but got to be worth a try? All ideas gratefully received! I have a follow up with breast surgeon at end of Jan so guess I will hear when my first mammogram is then. Will be a year since diagnosis in April. Do we ever get told we are in remission or is BC so evilly hard to detect as it can appear anywhere that they darent? 

Member

Re: Moving forward and getting in with life

Hi Sue, Kiki, Oncewild (love that name - I was once too) and Ann,

 

Thanks for your posts they exactly describe how I feel since finishing rads just before xmas. What is normal after BC treatment? The whole thing came out of the blue, then it was 'bish - bash - bosh' full on action and now, well that all seems ok off you go for a few months forget about it and get back to normal. Er, how do I do that?

 

I'm truly not moaning, I feel very fortunate and it is so good to know I am not alone. Gill

Community Champion

Re: Moving forward and getting in with life

Thanks kiki xx

Member

Re: Moving forward and getting in with life

Hi All, just seen this thread and I know exactly how all of you are feeling. When the treatment finished and the hospital discharged me I felt pretty helpless and a bit abandoned. However almost two years on from my mx and reconstruction, most of the time I manage to put it to the back of my mind, but when the annual mammogram comes round (and Im currently waiting for results of mine from 22.12) it brings it all back and the fears of recurrence surface again. The good thing is it does stop you taking things for granted and makes you value every day and get on with the things you want to do without delaying them all the time. 

A year ago I couldn't imagine going through a day without thinking about the breast cancer, but I think this year there have been days when I haven't thought about it so I do feel that I am moving forward.

Best wishes to all you ladies and I hope with time you will feel you are moving on. Xx

Community Champion

Re: Moving forward and getting in with life

Hi oncewild

Thanks for sharing. I know exactly what you mean. I'm itching to get back on track, so that I don't waste a day. Determined to see my friends and family more, go back to work, and get out and about more. To get back a little of that life I had before. How are you finding the letrozole? I've been taking it for 10 weeks, in combination with zoladex. Not too bad except for the aches and pains.

Good to chat with someone at the same stage. Did you have chemo?

When do you get a mammogram?

Sending a hug xx

Member

Re: Moving forward and getting in with life

Hello Sue and Ann

 

hopping on the thread to share. I too finished rads just before Christmas and feel like it's a turning point. Still having herceptin jabs every 3 weeks till June and letrozole for years but pleased the biggies are over and done. Very pleased to have 5 o'clock shadow eyebrows and that my white fluff hair is thickening daily. Am feeling positive about the new year and determined to pack it with fun and happy times ....... but am also terrified that the cancer will recur. I have a looming feeling that I can't shake off that my life will be shortened by recurrence, whether it's in 2/6/10 years. I feel a pressure to make big decisions about my life so that I don't have regrets on my deathbed and I have a list of music I want played at my funeral and I am updating my will. I don't talk of this with my hubby or friends because people just poo poo it. But it is very real to me. Determined not to let it overwhelm me and am hoping in time it will fade away. I miss my old life, the simplicity and positivity of believing all was well and a life plan that was straightforward. I mourn the loss of my boob and my damaged veins. Sorry for being morbid - I am really ok but just beneath the surface lurks a bit of blackness. X

Community Champion

Re: Moving forward and getting in with life

hi Sue C,
It is normal to feel like this, it is odd finishing treatment, a sort of 'now what?' feeling. I reassure myself by reminding myself 'nodes clear,' 'good margins' & now, having finished rads & on tamoxifen, so bc is far less likely to be a risk than before embarking on all this.
Anyway, first follow-up mammo due in Jan, so reflecting on it all again!
ann x
Community Champion

Re: Moving forward and getting in with life

Hi Ladies

Just thought I'd join this thread as struggling a bit at the moment. Finished rads just before xmas, which was great, but now that all the excitement has died down, I'm  wondering what to do with myself. And am sooo scared that now I'm not having treatment, the cancer might come back. Worrying about every little ache and pain.

Promised myself that with the new year, I need to put this all behind me, but it's so hard. Finding it difficult to move on.

Thanks for reading x

Community Champion

Re: Moving forward and getting in with life

Well, following removal of my bc with "good margins" clear nodes & "no evidence of metastic disease," I will take it I'm now clear & move on, thank god I went for my routine screening, it could have been a lot worse.

love & best wishes to all,

ann x

Member

Re: Moving forward and getting in with life

On this sbject will we ever get the All Clear or isit just a matter of plodding through. xxx love to all Mary

Guest
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Re: Moving forward and getting in with life

Hi Anita
I agree on the family n friends side of it too. Apart from my hubby who also cant get his head around not getting the all clear. Hmmmm. Xx
Member

Re: Moving forward and getting in with life

I feel exactly like you Tina. Just wish someone could say the treatment is done & now yr all clear but I know they can't. But what makes it worse is that is how some friends & family see it as & if I try to explain they seem to think I'm just being negative but I'm not - just realistic!

Guest
Not applicable

Re: Moving forward and getting in with life

Hi Mary
Thanks for that. I just wish there was some kind of test to say all clear. Its something i obviously have to get my head around! Xx
Member

Re: Moving forward and getting in with life

Totally know how you are feeling as when my rads finished on 13th Oct I was hapy o have got to the end but very nervous/scared as I was on my own. I know we just have rads and leave but it was a kinda security blanket and when taken away it was scary. A month on things have settled but I must admit I still overthink every ache/pain and panic in case its something sinister which I know is very unrealistic.

Things will settle over time so please be kind to yourself Tina.Take care Mary xxx

Guest
Not applicable

Re: Moving forward and getting in with life

Hi all
Im now on my last 3 sessions of radiotherapy. Im still getting herceptin and am on tamoxifen..
What im really struggling to get my head around is that once i finish Wednesday it'll be bye bye off you pop n get on with your life. ....until mammogram next year.
I was told i had to have this chemo n rads because there was signs of " vascular invasion". Ok.....so theres nothing i can have to say...."all clear"? X
Member

Re: Moving forward and getting in with life

Kate don't be so hard on yourself love, you have been though an awful lot and the end of treatment doesn't suddenly make everything ok, in fact I think it's the first time most of us are able to take a breath and reflect on what the hell has happened to us! There is no time scale to moving on, I'm 18 months from diagnosis now and most of the time it's just something that happened to me but there are days when I think too much and it becomes overwhelming, Try and focus on what you have coped with and how strong you really are! Xx Jo 

Member

Re: Moving forward and getting in with life

Just found this thread. I haven't been on the forum for months but am finding things tough at the moment. It is nearly 2 years since I was diagnosed with DCIS. I had an mx with reconstruction using a tissue expander that was swapped 6 months later for a permanent implant and symetrisation. I then had nipple reconstruction surgery this April. I have coped well with e everything but have found nipple reconstruction quite distressing. I got very emotional at my second tattooing session and felt totally ridiculous for weeping. I think it is realising that I am at the end and it is never going to look like I looked before. Weird because I hadn't worried about that before. I suspect it is made worse by my mother dying, kids leaving home and menopausal mood swings. Soo frustrated with myself. 

K

Member

Re: Moving forward and getting in with life

Hollyberry,what a lovely,lovely message...I can understand where you are coming from as well.Mammogram 12tgJuly,biopsy on 22nd,Dx 31st and mastectomy 5th September.All 2013,then DIEP July 24th 2014.Final 2 ops April and May 2015.

You are right,it is the dates,and inwardly you relive it all,but on the outside you are smiling....basically I am a glass half full person, and look at what I can do,and am swimming,Pilates,and walk.Have brilliant family,and good friends.Have lots going for me.....your reply has made me feel less alone,thankyou.

love and gentle hugs....💓💓💓💓💓😍

PS .....still not tolerant of people who have nothing really wrong with them,but still moan....😟😟😟😟😟

 

Member

Re: Moving forward and getting in with life

Hi jillybee I was also diagnosed 3 years ago with IDC. I had a masectomy and SNB and then an axillary clearance as cancer found in the sentinel node. I am taking tamoxifen which has had its own side effects and led on to further tests for a thickened endometrium. I had an endometrial biopsy and hysteroscopy which came back clear. I also ended up having a colonoscopy for recurrent constipation which also came back clear and I am convinced was caused by the tamoxifen. Last but not least my two big toe nails and several of my finger nails look very odd and have been extremely painful on and off my GP prescribed antibiotics and checked to see if there was a fungal infection but that came back clear. I told my oncologist who referred me to a podiatrist who said oh yes we see a lot of this with tamoxifen. 

 

i can see why you are finding it hard to move on you have been through an awful lot. The thing is physically that reminder is always there. Be gentle with yourself as you would a friend if they had been through what you have. It sounds to me as if you have coped really well.

 

i find the month of August and the beginning of September really hard as the dates of my finding the lump, going to the GP, my diagnosis and two operations come round again. I found my lump on 4th August 2013, went to GP on 5th August and was diagnosed on 13th August. For the last few days I have been feeling very emotional remembering what I was going through 3 years ago and it has been difficult keeping the tears at bay.  I have been chasing up my yearly mammogram, I have to chase every follow up appointment and this makes me really angry it's hard enough without that.

 

i am sorry about the essay I just wanted you to know that you are not on your own.  You have been through such a lot and been really strong. You will find the strength to move on.

 

Take care I am thinking of you.

 

hollyberry

 

 

Member

Moving forward and getting in with life

Dx 3 years ago with high grade DCIS left side,so had double mastectomy and they operated on right side,as implant from previous breast cancer had twisted.Had 8 lots of surgery,as ultimately implants failed,so removed.A year later,had DIEP, followed by 2 more lots of surgery,on abdomen,after seroma that capsulated and loculated.This resulted in scar tissue and apparently subcutaneous fat....lost over a stone,upped my exercise...still got big tummy,and uncomfortable....

Nothing else can be done,but just can not move on.I am feeling much better,but continue to feel flat,and a bit tearful....anyone else feel like this,or is it something you learn to live with.