Hello from Janey

Janey235

Hello all my pink sisters. I haven't blogged for a while now but I have been reading all your posts pretty much every day. I had returned to work in February for two days a week, Mondays and Fridays but I really struggled at first with fatigue and became uncertain as to whether I could actually do the job. I'm settling a bit now having moved my days to Mondays and Tuesdays for the month of March and then will slowly increase the days after that. I have been quite emotional too lately, crying at the drop of a hat and getting upset with myself. I think, now that the main part of my treatments is over, I feel like I am 'flapping in the breeze', like I'm cut off from the medical professionals that supported me for the last 12 months and they have just about disappeared of the radar. I didn't realise how much that would unsettle me so I'm slowly learning to cope without this support. I'm still having Herceptin every three weeks but that too will finish in May. I'm in two minds about that, I can't wait for it to finish and not have to go in to Peter Mac every three weeks but I also have a nagging fear that this will be another string cut and I'll be not only flapping but blowing around and out of control. I have even had trouble replying and making posts here recently because I seemed to have run out of words. I'm not sure what's going on with me. I seem to have lost the plot a bit. So forgive me not being part of your blogs lately. I was getting a bit stressed I think and needed some time to work myself out.

Love to you all and hope you are okay.

Janey xxx

Michelle_R

Have been catching up on your blogs to find out how you have been doing.

Dear Janey, you have been through so much for the past 18 months - all with medical backup - and it is no wonder you are feeling lost as it begins to dwindle away. It is a good place to be at though - nearly at the end of the roller coaster!  When we start the journey, we can't even see that far.

All I can tell you Janey, is that it does get better. The first 6 months are the hardest to adjust, the next 6 you start to feel back in the real world, and after that life gets better and better.  It's okay to be stressed.  It will pass.

Pace yourself at work, breathe in your beautiful view, and open your eyes to enjoy the light at the end of the treatment tunnel.

Thinking of you and sending a big hug,  Michelle xx

Viv_C

Great to hear from you but sorry to hear that life is feeling a bit overwhelming. I was thinking about you when I saw news reports about restructures at your university. That must be making work very unsettling on top of your feelings about being cut off from your medical team. After all the rigid and time consuming structure of a treatment regime, you are now in a much less certain world. No wonder you are feeling a bit lost.

The best advice I can give you is to be kind to yourself. I remember after my treatment ended first time round I was incredibly moody and emotional for months afterwards, but it did pass in time. I just tried to focus on things I felt good about and tried not to beat myself up about things I thought I 'should' be doing or feeling. And I ended up changing direction in terms of my work by becoming a full time student for a while which turned out to be lots of fun. As was dragon boating- and you know you are always welcome to come and try that.
Big hugs and hope to catch up at a lunch soon.
Viv

TonyaM

Oh darling,what can I say.Just stay here on the BCNA network life raft with the rest of us.It's abit like being put off the ship and cast adrift.Back in 2010,I so wanted to get back to work after my treatment and pretend I was normal again.I only worked part time but I was tired and bald and somehow felt I didn't fit in or missed a chunk of time -not sure what it was.I really think it takes about 2 years to feel more confident in your health.Are you on Tamoxifen?I can't remember-cos that drug can affect your emotions. When I first started it,I was crying one minute and laughing (or screaming)like a crazy woman the next! You have been through so much and we can identify with what you are feeling now.Big hug, love Tonya xx

WendyMac

It was so lovely to chat with you on the phone earlier.  An here you were supporting me when I said I had a down day!  Right back at you!

As you know, I am only at the beginning of this 'journey' and I find it really comforting to have somebody on this forum who seems so friendly and positive and encouraging.  Michelle (above) and actually pretty much everybody, seems to be the same.

I can only imagine how it must feel to have all the support, that comes with treatment, coming to a stop.  It must feel a bit like flapping around! Hopefully it will remain a breeze and not turn into a gale force wind.  All the best.

Wendy xx

yetbeung

So sorry to hear that you're down, it might not make you feel any better but I was feeling the same way during my last treatment - now that the countdown is on to the last one, I have people asking how I feel now that it's "almost over", but I feel stupid in saying that I don't want it to be over! I was told that I don't have to see anyone til June (after the radiation, that is) and already I feel nervous about having the fortnightly "security" cut off. I thiink my next chemo will be thrilling and terrifying all in one go, and it's very hard to explain to someone who doesn't get it. 

As if by magic, my lovely breast care nurse called me this afternoon, I had a big vent to her about this, and she said that at no point should I ever feel "cut off" - I am always able to call her, she said, to which I replied "Yes, but I'm sure over time there will be other ladies who need your time more than I do" and her reply hit home a bit - "Actually, you'll find that it's you that will need my time less and less. Until then though, we are here for you to use! " She really has been lovely and I'm sure they are not going to turn me away just because I feel a bit lost and lonely. 

I'm also nervous about work, have to keep reminding myself that it will be like a new job and to take it easy and not just expect to slip back into the role - a lot has changed back there and I doubt there will even be people I know. So something that was meant to be familiar and safe is now also scary. Too many scary things! I'm worried about treatment being over and done with because then it will be necessary to go back to "normal" and very hard to explain to people that can't see anything wrong with me, why that may not be possible. 

Please let me know if there's anything I can do to help you, even if you need a hand with organising group coffee / lunch / whatever...or just a chat...I haven't been very vocal on here lately either, because like you, sometimes I don't know what to say, have no words, or just feel better taking comfort hiding in the background! As much as I like to be positive, it does take effort and I'm now allowing myself to be neutral as well.

 Take care, hopefully things will begin to look up for you :-)

from Bobbie 

yetbeung

So sorry to hear that you're down, it might not make you feel any better but I was feeling the same way during my last treatment - now that the countdown is on to the last one, I have people asking how I feel now that it's "almost over", but I feel stupid in saying that I don't want it to be over! I was told that I don't have to see anyone til June (after the radiation, that is) and already I feel nervous about having the fortnightly "security" cut off. I thiink my next chemo will be thrilling and terrifying all in one go, and it's very hard to explain to someone who doesn't get it. 

As if by magic, my lovely breast care nurse called me this afternoon, I had a big vent to her about this, and she said that at no point should I ever feel "cut off" - I am always able to call her, she said, to which I replied "Yes, but I'm sure over time there will be other ladies who need your time more than I do" and her reply hit home a bit - "Actually, you'll find that it's you that will need my time less and less. Until then though, we are here for you to use! " She really has been lovely and I'm sure they are not going to turn me away just because I feel a bit lost and lonely. 

I'm also nervous about work, have to keep reminding myself that it will be like a new job and to take it easy and not just expect to slip back into the role - a lot has changed back there and I doubt there will even be people I know. So something that was meant to be familiar and safe is now also scary. Too many scary things! I'm worried about treatment being over and done with because then it will be necessary to go back to "normal" and very hard to explain to people that can't see anything wrong with me, why that may not be possible. 

Please let me know if there's anything I can do to help you, even if you need a hand with organising group coffee / lunch / whatever...or just a chat...I haven't been very vocal on here lately either, because like you, sometimes I don't know what to say, have no words, or just feel better taking comfort hiding in the background! As much as I like to be positive, it does take effort and I'm now allowing myself to be neutral as well.

 Take care, hopefully things will begin to look up for you :-)

from Bobbie 

mum2jj

Janey, when my treatment finished the first time around I found it really hard. Everyone wanted to celebrate with me, and kept telling me how great it was and all the while inside I was feeling lost and lonely and scared. I actually missed the appointments etc. I know that must sound weird, but I did. Second time around I was better, but I'm not sure if that was because I was busy planning a reconstruction and so was still seeing doctors. I am still probably going to have a revision, and so as such still see my PS. maybe at the end when everything is finally finished I will feel weird again. Who knows. I do however feel stronger this time around. I think there is a huge expectation from others who don't really get what we have been through for us to put on a big smile and get on with life, however for many of us we feel like...OMG what have I been through and how can I move on? Hang in there beautiful lady, it does get better. I actually had some phone counseling from the cancer council that really helped me at the time. Be kind to yourself and know we all get it.
Hugs

Paula xxxxx

mum2jj

Janey, when my treatment finished the first time around I found it really hard. Everyone wanted to celebrate with me, and kept telling me how great it was and all the while inside I was feeling lost and lonely and scared. I actually missed the appointments etc. I know that must sound weird, but I did. Second time around I was better, but I'm not sure if that was because I was busy planning a reconstruction and so was still seeing doctors. I am still probably going to have a revision, and so as such still see my PS. maybe at the end when everything is finally finished I will feel weird again. Who knows. I do however feel stronger this time around. I think there is a huge expectation from others who don't really get what we have been through for us to put on a big smile and get on with life, however for many of us we feel like...OMG what have I been through and how can I move on? Hang in there beautiful lady, it does get better. I actually had some phone counseling from the cancer council that really helped me at the time. Be kind to yourself and know we all get it.
Hugs

Paula xxxxx

Yoga nut

I to completely understand Janey ... I had my last chemo 2 weeks ago which I am so relieved about but it also terrifies me ....particularly being TNBC. That's it . I don't need radiotherapy and there's nothing else to take . So it's sort of like being thrown out of a plane with a parachute with no instructions!! Hope the thing works and hope I don't slam into the ground !
Physically I'm great but I've had a few flashbacks and nightmares too . I think it takes time for your mind to catch up with your body . They encourage women at my breast centre to see the psychiatrist there post -op and I was reluctant at first but it has been invaluable for me . We have a monthly appointment which is great because as things evolve and change she has such a great way of helping me understand and get a different perspective on what's happening , other peoples behaviour etc . I'm sure there would be similar at Peter Mac .

I figure we just need to grow wings now Janey and fly so we don't feel like we're falling into space I've been doing every bird related yoga pose I've ever known and I think my wings are becoming a bit more reliable every day . ! I also think this is a really really common phenomenon, but that doesn't make it any easier to deal with . All the best to you Janey . You were always so kind to me when I was first here and I hope the coming weeks will be easier for you xxx Karen

Yoga nut

I to completely understand Janey ... I had my last chemo 2 weeks ago which I am so relieved about but it also terrifies me ....particularly being TNBC. That's it . I don't need radiotherapy and there's nothing else to take . So it's sort of like being thrown out of a plane with a parachute with no instructions!! Hope the thing works and hope I don't slam into the ground !
Physically I'm great but I've had a few flashbacks and nightmares too . I think it takes time for your mind to catch up with your body . They encourage women at my breast centre to see the psychiatrist there post -op and I was reluctant at first but it has been invaluable for me . We have a monthly appointment which is great because as things evolve and change she has such a great way of helping me understand and get a different perspective on what's happening , other peoples behaviour etc . I'm sure there would be similar at Peter Mac .

I figure we just need to grow wings now Janey and fly so we don't feel like we're falling into space I've been doing every bird related yoga pose I've ever known and I think my wings are becoming a bit more reliable every day . ! I also think this is a really really common phenomenon, but that doesn't make it any easier to deal with . All the best to you Janey . You were always so kind to me when I was first here and I hope the coming weeks will be easier for you xxx Karen

Deanne

It is hard to adjust to the end of all that medical contact. I have found myself very up and down emotionally. The things that are helping me are the new support systems that I have luckily found along the way.

I have the most wonderful support from my daughters and husband of course. We have changed our eating habits (one daughter is my best support for this) and we are finding little challenges, exercise wise, to do together. I have a wonderful lady who I now see once a week for pink Pilates. She is a physio and therefore a medical link for me to discuss any issues I have with.

I am very fortunate to have moved into the most wonderful little community. My neighbours are the most amazing bunch of people and have proved to be an unexpected support group that I am very thankful for.

And then there is this most amazing network that has given me support and therapy along the way and continues to do so. Just checking in here most days helps me to feel so much less alone. Hope you are feeling better, we are here for you so that you need never feel that you are alone in this battle to readjust to life after treatment. Lots of love. Deanne xxxooo

Janey235

You are all so wonderful. Thanks for your support. I am feeling much better this week, haven't cried much so that's a start. I am back to organising the Melbournites Lunch and that's been great as I feel connected again. It's given me some purpose. I'm going to attend the Field of Women in May with my family which will probably be emotional but in a good way and then I'll be joining the Mother's Day Classic with my daughter, sister and niece which will be lovely. Have to get fitter for that one

I'm going to try and stay more positive and keep thinking to myself that I have this thing beat. That's an a achievement and I should keep that in mind.

Thanks again for your lovely words of encouragement Ladies. I really do appreciate it.

Love to you all

Janey xxx

Janey235

You are all so wonderful. Thanks for your support. I am feeling much better this week, haven't cried much so that's a start. I am back to organising the Melbournites Lunch and that's been great as I feel connected again. It's given me some purpose. I'm going to attend the Field of Women in May with my family which will probably be emotional but in a good way and then I'll be joining the Mother's Day Classic with my daughter, sister and niece which will be lovely. Have to get fitter for that one

I'm going to try and stay more positive and keep thinking to myself that I have this thing beat. That's an a achievement and I should keep that in mind.

Thanks again for your lovely words of encouragement Ladies. I really do appreciate it.

Love to you all

Janey xxx