What now??

[Ethel_horner]

Just to say I love your posts. They have made my journey easier. Your comments are so helpful and I just wanted you to know how much I have appreciated you. 🙂

[Guest user]

Hi Wintersocks and all,

Although I finished chemo in February I am not yet finished active treatment as have 2 more Herceptins to go. I was far too exhausted to feel anything after last chemo. However, I am now feeling a lot better - but nowhere near back to the way I was, and I have, usually, accepted that it will take time.

I started a course run by Maggie's Centres 3 weeks ago called 'Where Now?' It runs once a week for 6 weeks and focuses on building up stamina and strength, nutrition, returning to work and emotional adjustment and is shaping up very well. One of the ladies on the course (not BC) feels cut adrift whereas I am fed up with the constant appointments and look forward to them reducing drastically although I much prefer seeing some 2/3 times a year.

I can also recommend Peter Harvey's essay - he totally 'gets it'.

I see my breast surgeon every 6 months for the next 10 years with a mammo every 2 years. Because I am on a trial and still having Herceptin, I have seen my onc nurse every few months since February. I have another appointment with her just before Christmas but have no idea what happens re onc after that, except to say that I expect to see her every time I have a heart scan (because of Herceptin) which will continue for some time.

I also keep up with other BC ladies through Facebook and I am one of RevCat's 'GABBIES' and much appreciate meeting women further on than me at our lunches who offer support and understanding because they have 'been there'.

Good luck with the new you. Take care, Liz, x

PS I think all our friends and acquaintances think once active treatment is over we should 'get back to normal', especially if we look well. I usually say to people it could take years - although I hope it won't!

[aroma]

further to my recent post .my appointment with the oncologist 2 weeks ago should have been my last check up ,but this was where they found the suspect area near my rib hence todays bone scan ,i having to wait a few weeks for results but having been in this situation before i find im not so anxious as i was . i was really hoping to wave goodbye to the hospital unit after 6 yrs of appointments ,and hopefully if my scan is clear i will do so very soon .ive been thinking of all your posts and feel that the hospitals should give us a wave goodbye session just to put our minds at ease .thrown to the wolves is not a nice place to be in as we feel like our safety blanket has been pulled from us .thank goodnes for forums like these for us to offload ! xxx

[grumpy]

Hello Ladies
I must be a bit different from all of you - I'm champing at the bit to get on with life. The only way I can explain this is because I had 8 months neo-adjuvant letrozole prior to surgery and rads, so I had a lot of 'thinking' time before the really invasive treatment started, whereas you were all thrown in at the deep end. How awful that must be...... This DX seems to mean we live on high adrenalin levels, and that is completely exhausting but necessary to keep us focussed on getting well. And then treatment is over, adrenalin levels bottom out, leaving us drained physically and emotionally, we feel like we've used up all our reserves and are just empty.
From DX to end of rads was exactly one year for me, and it WAS hard work. Now I just need a bit of corrective surgery to straighten things up: because it seems to be taking so long to organise - nearly 2 years so far - I'm getting frustrated because it's holding me back from properly getting on with life after BC.
So I reckon we all have the glums at the end of treatment AND it does seem to improve. Of course we still have our breast teams at the end of the phone and this forum to turn to, and I find such support invaluable.
hope this helps a bit
grumpy

[Lilac_Blue]

It's interesting Kathryn when you said:
I said the same as you to a friend on the phone this morning and she said it's a journey and that time will come. I hope the moving on day helps, and I'd like to hear about it. I too saw my Onc last night and she was reassuring. We have been thorugh the mill. Big hugs to you (((Kathryn))).

[Hilly1]

Hi Ladies, So many of you seem to be feeling just the same as me. I finished treatment on 5th Sept (apart from Tamoxifen and injections to supress my ovaries) The last few weeks have been really hard emotionally as there's more time for worrying if the cancer will come back. I've turned into a hypochondriac, BC (before cancer) I had barely set foot in my GP's surgery yet last week I even rang when I had a cold that seemed to be lingering , he was very understanding.
I had an appointment with my ONC yesterday, she checked my scar (left MX no recon) and put my mind at rest as it seemed very lumpy to me. I had 6 out of 8 nodes affected and the worry that they are still floating around will not go. Hopefully the Tamoxifen will do its work if any are any rogue cells around. I already have another apointment for 4 months time, this seems to be the set up here ( west country somerset)
My breast care team have arranged a moving on day next week which should be useful.
I'm sure the day will come when I don't have a thought about cancer.
Kathryn

[Guest user]

Hi WS. Congratulations on the end of radiotherapy and commiserations on not feeling as brilliant as you expected. As Cressida says it's a fairly abrupt end in the radiotherapy room and then nothing. Don't forget that you are still getting the fatigue side effects of radiotherapy, my OH had bought bubbly to celebrate the last zap to mark the day and I really didn't feel that way at all, and everybody expects you to be so bl**y upbeat. Went back to work and demoralized by my chemo brain and creaky joints felt even worse. It has been a bit like swimming in treacle BUT for me and hopefully all of us it does improve. I am lucky in that I could take reduced pension and retire early, now have to be sure to enjoy the space and time. Whilst not disagreeing with the need to look forward and be positive I do sometimes think it can be a bit of a burden, sometimes I want to mull over the "what if's" and it doesn't help for everyone to think they have to jolly me along. Another article by Peter Harvey is quite good

The Perils and Pitfalls of Positive Thinking - Cancer Counselling Trust

www.cancercounselling.org.uk/northsouth/extra4.nsf/.../Article.pdf?...

He's not saying that we have to be negative just not to beat ourselves up when we don't feel positive. Have a lovely meetup with the March girls WS, I loved meeting the September girls, and hope to see you soon 🙂 J x

[Guest user]

Hello everybody. I'm new too, just joined, finished my last treatment in July (apart from being loaded up with Tamoxifen) and it's now my "anniversary" of diagnosis. Last night I started to wonder about my 12 mth appointment - will I find out it's clear? What happens at this appointment? Like everyone else, I feel left in limbo. Why do they not tell you what's next, what exactly they'll do at the appointment, will I have a mammogram/scan/be told I'm clear or not???
I'm not afraid of treatment - wow, as you all know, it's been an experience - but I don't like all this not knowing. Counting down my days til appointment - 35 - and I'll be sure to post what happens during this for all you others out there who're wondering "what next" too.
Keep strong girls - we're all amazing

[Cressida]

Hi all,

I have only just joined this site mainly because my round of pioson, cut and burn has just ended and I find myself in a kind of limbo. The comments everyone has made are very helpful. Thanks particularly to Maryland for the article. I am feeling quite upset and bereft of the support of all those lovely people in waiting rooms who share all sorts of personal information within minutes of meeting you. I am TN so, despite the brutality of Taxotere and a mastectomy, everything came to an abrupt end on Friday in a radiotherapy room without even a follow up appointment. I don't believe "back to normal" is possible and I feel like I have to start over again without a map. I won't give you any "be positive" nonsense - I think it is just reasuring that others feel the same and I am not some kind of needy weakling for not being able to pull myself together.

xxx

[ruthu]

Hi Wintersocks. Everything that everyone has posted on this thread makes so much sense. Over the past couple of days - partly thanks to all the lovely comments on the forum I have come to the conclusion that having finished rads 3 weeks ago and gone on to tamoxifen , this is exactly how I'm feeling! Took me a while and a very understanding husband to clear away all the other mush that was going on in my head. Megsmum - you're so right, haven't been this emotional since diagnosis! Really hope that you manage to keep strong WS. Don't try and deal with it alone. Do you have a good BCN who you can talk to? Take care.xx

[megsmum]

Hi socks i finished rads mid sept and was very very emotional almost like when i was first diagnosed, i think the fear of what if and what now is something that will stay with us forever. I have seen my onc since finishing rads and he checked area for soreness etc he said he had refered me back to surgeons for routine follow up but i will also see him yearly for 10yrs as i am part of the supremo trial. I think that as we start to look "normal" again ie. with hair and eyebrows friends and family will forget but for us this is now something that will always be in our thoughts.
keep strong xx

[Guest user]

[Carabel]

WS I also completely understand how you are feeling. I expected to feel elated at the end of radiotherapy but instead I felt quite low and a bit tearful. I felt scared to feel happy in case I was tempting fate. Everyone else also expected me to be super excited and I felt guilty that I didn't. However, that was at the beginning of September and I do now feel a lot better than I did. I never got the elated feeling that I expected but I am starting to feel more normal. Breast cancer is no longer the first thing or the last thing that I think about each day. The fear of recurrence is always there but I am hopeful that this will diminish as time moves on.
Take care. See you on Saturday.
Carole x

[wintersocks]

Thanks Ladies for your support.

nannabarb- yes, I totally agrree. I think that 'your'e cured thing' is so hard to deal with from other people. I usually just smile and nod.

Maltomin- Yes, mentally dealing with it all the shock, the whirlwind of treatment - the silence afterwards is very hard.

Revcat - I will look at the books you recommend - Thank-you for that and your kind words

Dib: totally agree with what you say, it is almost impossible to get away from. I too worry so much about recurrence risk. I also worry about reconstruction (i will have next year) and how to tell if it comes back on the recon breast.

CM- you are so lovely and always the voice of common sense (with tons of good humor thrown in). you were one of the first to respond to me as I posted 1st time with my suspected dx. Thank-you, Yes, I agree a final 'wrapping up session' would be so good' - just so we know where we are. But I guess as usual it is time/resources/and seeing the need for it. But I do have an appt with rads doc and surgeon just before Xmas. wellysocks are needed here in The Pennines - it was too too cold last night.



Lydia- yes, this is just how I feel. We can talk some more on Sat.

aroma- interesting you remember the last day of treatment so clearly. It is very significant isn't it? I am sorry to hear of your suspect area and need for a bone scan and wish you well and that whatever it is turns out to be it is manageable for you. a hip replacement too, that is a lot for you to be dealing with.

WSxx

[aroma]

hi i so remember the last day of treatment and that was 6.1/2yrs ago! it feels good in a way that treatments are finished but you are in limbo too as not well enough to fully feel healthy and yourself again ,if ever ,i still have a few health issues from treatments and am having a bone scan tomorrow for suspect site on rib and am due a hip replacement too!! also have lymphodemia so a constant reminder of my cancer journey ,but i say try to live one day at a time and before you know it a year has gone past then another and another ,you will never forget what youve been through but life tends to take over ,just be health aware but live everyday as you can ,as we know life is short and weve been fortunate to have come through the other side ,sadly a lot of my buddies havnt . i wish you wel .xxx

[Maryland]

Hi wintersocks.....this article by Peter Harvey may be of some help? It was given to me by a friend who had treatment 3 years ago. When i feel the need, I dip in and out of it.....finished my active treatment WLE, 6 x chemo, 23 rads in August and am starting to move forward woth tentative confidence!!
http://www.peterboroughbreastcancersupportgroup.co.uk/assets/AfterTreatment.pdf
take care xo

[chascat]

Socks
Wish I could offer some words of comfort but unfortunately I'm in the same position myself. I expected to feel europhoric once treatment had finished but I didn't, felt very low and very tearful. I was talking to my gp about it the other day and he said he'd be more concerned if I didn't feel low as it's such a normal part of the recovery process. What CM has suggested is an excellent idea, she's so right that we're left dangling in limbo once treatment has finished with no closure. Everyone tells us time is a great healer and we have to believe them and have to try and move on, I for one do not want to live the rest of my life feeling like this, but don't really feel in a position to change things just now.
Love Lydia x

[ChoccieMuffin]

Hi Socks, long time no read!

What next? Well, the rest of your life, for one thing!

I know what you mean though, about it being an anticlimax. I think everyone should have a final onc appointment - a couple of weeks after the end of active treatment so you've had a bit of time to get over the last of the major side-effects like rads cooking. AT this appointment the onc could sum up what's happened to you, and what you've been through, give the formal "No Evidence of Disease" statement, and wish the patient well, with a reminder of survival statistics (if that's what you need) and reassurance that you can call your BCN any time you're worried about things, and finally an opportunity to ask any questions. Yeah, I know, cloud cuckoo land, but it would be good, wouldn't it...

It's a bit like when someone dies, there's a funeral to mark their passing. When our treatment ends, we need something to mark the end. I know of one person who arranged a night out with her friends to celebrate the end of treatment, and she had an absolute ball.

I meet up with a group of women locally, some from BCC forums but most not, and we have a great time. We talk about cancer and stuff a bit, but it's more about developing friendships, having a social life, LOTS of eating, doing things we might not have done on our own. We're all going to a spa day next Saturday because we feel we've earnt it, and it'll be a total blast I'm sure. If there isn't a group like that near to you, perhaps you could speak to your breast unit or cancer support centre and see if you can get one started.

And of course there's always here, and it'll be much better come the Spring when the forum's working properly again.

The experience of going through a cancer diagnosis and the grunt of treatment is now just another part of me rather than the "add-on" that it felt like when going through it. It's like having had my kids, university, marriage, divorce, pets, partners - it's another piece of the complicated jigsaw that is me. And I'm working on making it no more important than those other life-changing experiences, and on having newer ones. I'll be climbing up Mount Snowdon next year and I've hardly climbed anything higher than a ladder, so THAT's certainly going to be another one of those experiences!

Good luck, socks, and I do think of you every time I put on my comfy warm welly socks.

CM
x

[Jo_BCC]

Hi wintersocks,

Here's the link to BCC's 'moving forward' programme that you might find helpful.

http://www.breastcancercare.org.uk/moving-forward

Take care,

Jo, Facilitator

[dib]

Hi wintersocks,good question,whats next? i finished treatment awhile ago,just on letrozole now but when I asked at breast clinic what happens now,i was told just a yearly physical exam which worries me.how can a physical exam on reconstructed boobs reveal any reoccurance?We can never get away from bc,what with bernie nolan and now sharon osbourne being in the news no matter how hard we try to get on with things theres always something there to remind you.Its difficult and I dont think anyone of us can really forget bc and its effect on our lives.But then again maybe we shouldnt get complacent about it,the biggest worry for us all i would think is the fear of a reoccurance,How do others deal with the worry?
Di.x

[RevCat]

Hi Wintersocks,
I am one of the people who only joined the forum after ending active treatment. I was quite content to go through the treatment 'on my own' though did occasionally look at these forums and at the main BCC site. AFter teatment I just wanted somewhere to talk about stuff without boring my friends/family and with people who 'got it'. As time goes on, the cancer part of my life gets smaller (despite the fact I still post here a lot!). I find now when I read things people write about the early stages that I have to think hard to recall how I felt - and that's got to be a good thing.

I meet up with a lovely group of women in Glasgow every couple of months for lunch. Many of us are out of 'active treatment' and we chat about all sorts of stuff, but we also know we can, as one of our gang puts it 'talk about our bowel movements' because we have the common ground of breast cancer. I also keep in contact, via Facebook, with some other bc friends, and have met some of them in real life. Maybe there are folk in your area, or from your chemo thread you can keep contact with?

BCC offer courses and resources for moving on which are excellent. I wnet to a lympohdema awareness day (because I want to stay 'at risk' and not to get it!) and a lingerie evening, at both of which I met other people who 'get' it.

Because I like books, I read 'The Cancer Survivors Companion', 'Can Survive' and 'After Breast Cancer' each of which was quite helpful.

Most people drift away from the forum after treatment, and that's a good thing if it's right for them, other stick around to support a new 'cohort' and of course some come back due to health issues.

I'm waffling - it's late (for me) and my brainis mush. But hopefully in this there might be just a kernel of something vaguely useful...

[Guest user]

What now? That is exactly how I felt. Having gone for regular treatment for over a year, I walked out of the hospital and felt strangely "on my own". I expected to pick up the pieces and carry on as before but nothing was quite the same. My looks had changed and I had to get used to seeing myself in the mirror, not to mention emotionally. I expected to feel OK and when I had a couple of dips, I wondered why. I suppose I thought that everyone expected me to return to my usual well self and tried to be that, but it's not that simple. It takes time and I had not given myself permission to be kind to myself. So.... don't expect too much of yourself. It's natural to feel as you do. Pamper yourself a bit, you deserve it!
Sending a hug, Ami xx

[Guest user]

Hi
I'm a lot further on than you, four and a half years from dx and only a few months from finishing hormone therapy (scary).
I think most of us can relate to how you are feeling. It's certainly an anti-climax finishing active treatment. We (and those around us) feel that we should be 'over the treatment' and feeling 'back to normal'. but that just doesn't happen.
The treatment takes a lot out of us physically and mentally, and I think it's the mental scars that take the longest to heal. We are scared and that takes a while to get over, but you do. It just takes time.
You will feel better as time goes on and you will start to look forward to things.
Just don't expect too much too soon. It will come.

[nannabarb]

Hi Wintersocks, it is all a bit of an anti climax isnt it? Its still all you think about, but others will think you are 'cured'. As they say, just take each day at a time, and keep checking in on here, it is such a comfort and support speaking to others who know exactly how you feel
xxx

[wintersocks]

treatment for me has 'ended' today with my final rads, have had 7 chemo and mx (4 nodes) and letrozole for 5 years. I am now struggling with 'what next' and cannot believe that it is 'all over'.
Any advice as to how to move onto the 'next stage?'
I just still feel so terribly upset.

Thanks

WSxx