survivor 18 months on...

Hi Frankiebaby,

I'm still undergoing chemo, so I'm not yet among the ranks of the fortunate post-treatment folks you really want to hear from, but I found your story so moving that I felt I should write to you anyway.

I'm still in the throes of it all with chemo to finish and rads to go, my prognosis is good (stage 2b breast cancer) but I really share your sentiments of feeling alone in this episode of my life. Even though I have family and friends around me every day. Even though so many people have done so much for me. Even though friends and colleagues have said and written such sweet and kind things about me (that I probably would never have heard otherwise). I have so much to be grateful for, yet I feel alone. Nor do I feel that I deserve all of this bad luck. Why me?

Right now I feel that counselling would just open a floodgate of emotions when I am still too fragile. Maybe in a few month's time it would help me to turn the page on this chapter of my life.

Counselling might help you, or if you know anyone in your area who has had a similar experience you could meet up with them, a friend of a friend for example. It's always hard to pick up the pieces after such an event in our lives. And other people do forget that while we may seem to be doing great, inside we are still dealing with stray emotions that no amount of surgery, chemo or radiation can ever take away.

Be nice to yourself. Give yourself little treats. You deserve them! Persevere with returning to a good fitness level slowly but surely. You have been through such a lot and I am so glad for you that your medical tests are clear. That is wonderful news. WONDERFUL!

I'm looking forward to being at the stage you are right now in a few months .

Big hugs to you.

Take care

Kathleen

HI Kathleen - thank you so much for the positives and given your current situation I think that all those friends and loved ones are correct in their estimation of you . The 'alone' thing is a bit rubbish for you to be dealing with along with all the physical stuff that you have to get on with. I really appreciate you reaching out to me.

Councilling, I have done some and will probably do more but right now I feel I want to chat with others like me who know what I'm talking about because they have been touched by the same thing. There are no explanations when one talks with others like us, there is mutual understanding usually.

I suggest that you will know naturally when you are ready for councilling. I cried for probably a week before I brought myself to my support centre but I knew it was the correct move and it helped enormously because I was ready to participate. I reconnected the post-treatment-me to the pre-cancer-diagnosis-me. I did good for a fair while afterwards too, helped to give perspective on the adventure and insightful about the people around me friends, loved ones and aquaintences and how they were dealing with me and my new status in life.

I am very appreciative of my survival and current status and hopefully am living my life from that standpoint, certainly I am not wasting time if I can help it. But I do get the heebeegeebees and this is my latest effort at dispelling them and certainly you have helped with your positive words.

I wish you well. Your treatment, unlike mine, is over a longer period of time and it is a difficult road to be on even without the head spinning with thoughts and the feelings. Can I suggest that even if you are not ready for councilling yet, some of the support centres have other pleasant things on offer for relaxation and pleasure and might be a distraction for a bit. While I don't know the dos and don'ts for a girlie on breast cancer treatment I am sure that whatever support center is available to you can guide you to something pleasant to try. I wish you the best for the remainder of your chemo, I hope it goes according to plan and without too much of the possible rubbish that can be attached!

And thanks so much for the uplift () hug back to ya

Hi Frankiebaby,i just came across your post as i dont come on here too often.I was diagnosed with grade 2A cervical cancer like you in June 2010.I have to say im like you at times now, i do feel overwhelmed at what ive been through! I had 28 radiotherepy,6 chemo& 3 brachytherepy as well as an abandoned surgery!! I'll never forget when i was first diagnosed someone said to me sure its not too bad as your 40 & its not as if you were going to have more children!!!
Then because i didnt lose my hair or was lying in bed sick that i didnt really have cancer! I have found since then i cant tolerate thins as much as i used and maybe thats a good thing for me,it made me look at who was there for me and who mattered in life.
Its funny im back at work since April last year and getting on with "normal" life being a single mum to a 10yr old boy,but some people think because you look the same you should be jumping from the rooftops!! Most people really dont get what you have been through & that my life has changed. I lost my cousin to cancer in June 2011 and it certainly shook me,it brought home of what can happen. I finished my treatment in January 2011, but it took that full year for the tiredness to go.I have good days and an odd day when i get the heebeegeebees and think every pain is something and i suppose that will never go & im grateful to be here.
Like you say its the side effects now that we have to deal with, im going into hospital on monday to remove a build up of scar tissue. Im immune now to being poked & prodded, ur dignity certainly goes out the window.
I havent done any counselling yet, maybe i will i dont know.It is hard talking to people who havent been through this they dont understand whta weve been through emotionally and physically & that our poor bodies will never be the same again,even someone who had a different cancer its not the same as their treatment and now sideffects are different.
One thing ive noticed there arent too many posts in relation to cervical cancer even though there is a high enough diagnosis each year.But anyway i hope you see this and now know there are other people in the same boat.
Siobhán

[quote="Darcy1":3sf1dh5n]Hi Frankiebaby,i just came across your post as i dont come on here too often.I was diagnosed with grade 2A cervical cancer like you in June 2010.I have to say im like you at times now, i do feel overwhelmed at what ive been through! I had 28 radiotherepy,6 chemo& 3 brachytherepy as well as an abandoned surgery!! I'll never forget when i was first diagnosed someone said to me sure its not too bad as your 40 & its not as if you were going to have more children!!!
Then because i didnt lose my hair or was lying in bed sick that i didnt really have cancer! I have found since then i cant tolerate thins as much as i used and maybe thats a good thing for me,it made me look at who was there for me and who mattered in life.
Its funny im back at work since April last year and getting on with "normal" life being a single mum to a 10yr old boy,but some people think because you look the same you should be jumping from the rooftops!! Most people really dont get what you have been through & that my life has changed. I lost my cousin to cancer in June 2011 and it certainly shook me,it brought home of what can happen. I finished my treatment in January 2011, but it took that full year for the tiredness to go.I have good days and an odd day when i get the heebeegeebees and think every pain is something and i suppose that will never go & im grateful to be here.
Like you say its the side effects now that we have to deal with, im going into hospital on monday to remove a build up of scar tissue. Im immune now to being poked & prodded, ur dignity certainly goes out the window.
I havent done any counselling yet, maybe i will i dont know.It is hard talking to people who havent been through this they dont understand whta weve been through emotionally and physically & that our poor bodies will never be the same again,even someone who had a different cancer its not the same as their treatment and now sideffects are different.
One thing ive noticed there arent too many posts in relation to cervical cancer even though there is a high enough diagnosis each year.But anyway i hope you see this and now know there are other people in the same boat.
Siobhán[/quote:3sf1dh5n]

Hi Darcy1 - so pleased to hear from you. Your words describe a lot of what I experienced... from the ridiculous things people said, thinking they were being helpful, to what you say about people expecting you to be the same person as you were pre-diagnosis! I don't think so. I appreciate that you took the time to reply especially with you dealing with your own rubbish. I hope your procedure last week went ok and that you are back to whatever is normal for you in our new reality. I have just been for my second to last 3-monthly consult, still nothing new to be concerned about, always a good thing. I agree with your comment about getting used to everyone and anyone comin' at ya...dignity doesn't play a part in the cancer fight. I am grateful and appreciative that I am doing good but survival has it's own mind games going on. What you have said and the fact that it is so similar to mine own experiences is comforting...if that doesn't sound too mad. Councilling will help when you get to that point. The ARC centers are good and very reputable. I agree with you about talking to people who have not actually had the cancer experience...it is always good to talk but not quite the same thing as talking to one of ourselves ...if you know what I mean. I am doing ok these days mostly. It is never very far from my thoughts, hypochondriac and all that. I am not the active mad girlie I was 2 years ago ...just don't have the energy, always feel a bit below par but positive enough generally and enjoying all that I can. You have given me a boost. Thank you for that. Keep good and stay well and let me know how you getting on

ooo hugs for ya

Hi Frankiebaby, well i had my procedure last monday and got home that night thank god.Was a bit ropey the next 2 days, i felt as if someone had kicked the life out of me.Got rid of all the scar tissue inside and cant believe the pain in my leg which i ahd since last June is gone.It was pulling on the nerves and also my bladder! They did a biopsy on my cervix & womb and thank god they were clear! That gave me a real lift.But you know what it feels like not to be too cocky as that little niggle in the back of our minds will always be there.
I had a great chat with doctor while there,she was young and told me all about what they did and what i now have to do(dilators!!) to prevent it from happening again.Also about pains i was having being caused by radotherepy & the scar tissue that had built up.Its great when you hear things in simple terms, i feel now i can start to move on a little and not worry too much of every ache.She said of course it is normal to feel like that.
I'm definately going to start back doing some exercise, ive nearly 2 stone on and hate it, its all over so im not really mrs blobby but i do feel very bloated.Of course 2 days ago a friends mother said "of course your feeling the heat, the size of you!! you got very fat!!" She's lucky i didnt throttle her! Her own daughter has just been diagnosed with breast caner, i wonder what shed say to her! Anyway i dont concern myself with people like that anymore! People dont seem to understand what our bodies have been through and they will never be the same again.But we will keep the chin(s) up and keep going.Its hard to believe we are nearly 2 years on this journey,i'm not back in the Mater & St Luke's until August, So time is going quick.I hope your keeping well and looking forward to the summer.I hope you start getting your energy back(did you ask your doctor about iron etc) and go out and do some mad things,im taking my son to westlife in belfast on friday night and staying over and then chill out over the weekend.I'm planning to decorate some of the house this year,so that will keep me busy choosing what to do.I want to do things for myself this year, some me time, i think we deserve it.
Lots of hugs
Siobhán

Girls, it's great to hear all these things... Feel like I'm expected to pull myself together now that it's over.... On a high at the moment but the lack of energy is a killer.... Everything that happened seems so surreal... The way life has to get back to normal and you have to be normal again and forget it ever happened... I feel like I've put my family through enough so it's time to shut up about it.... Only on Tamoxifen 2 days and will be starting Zoladex next week so now I'll be menopausal too... Think if I complain that I'm only being a whinger.....

to Darcy1 - delighted with the news of your procedure...good for you that you lost the pain in the leg as well.. bonus!. And getting all the other nice news at the same time...I can identify..always good to be told stuff that makes sense to us and is positive, nothing like good news to make your day. I'm really pleased for ya. I know about the 'too cocky' feeling...like pushing a bit too far will catch up with us...superstitious maybe. Enjoy the positivity of the news, take it for what it is right now ..fabulous news...and don't be focussing on the heebeegeebees. Not for today anyhow. The whole weight thing...I put on a stone and though I went back excerising practically from the end of the treatment it hasn't helped me move it...in fact I put it on in the first months after treatment. I cannot exercise to the level that would shift it, body tired at the beginning, now it is just sore...back issues causing the legs and ass to cramp up...at least nobody too concerned at the hospital so I now following up with gp. Try to keep the food portions small but tougher than expected. We'll get there eventually

to Taurustwin - I say if you cannot whinge here where can you? Anyhow it is not whinge-ing, we are sharing how we feel in a safe environment with others like ourselves. The tiredness is tough but over time it lessens...I in the menopause too, tiredness is part of that experience too but it feels different to the treatment tiredness..I better than last year but I do have to give myself some early nights and late mornings to do catchup.

And ladies all - positive mental attitude to the world is good but getting things off the chest somewhere, anywhere is also good. We have to appreciate that it is valid to be miserable sometimes too. Get it off and out there. And then get on with it!

We are all fabulous hugs oooox

[quote="frankiebaby":90xfeses]to Darcy1 - delighted with the news of your procedure...good for you that you lost the pain in the leg as well.. bonus!. And getting all the other nice news at the same time...I can identify..always good to be told stuff that makes sense to us and is positive, nothing like good news to make your day. I'm really pleased for ya. I know about the 'too cocky' feeling...like pushing a bit too far will catch up with us...superstitious maybe. Enjoy the positivity of the news, take it for what it is right now ..fabulous news...and don't be focussing on the heebeegeebees. Not for today anyhow. The whole weight thing...I put on a stone and though I went back excerising practically from the end of the treatment it hasn't helped me move it...in fact I put it on in the first months after treatment. I cannot exercise to the level that would shift it, body tired at the beginning, now it is just sore...back issues causing the legs and ass to cramp up...at least nobody too concerned at the hospital so I now following up with gp. Try to keep the food portions small but tougher than expected. We'll get there eventually

to Taurustwin - I say if you cannot whinge here where can you? Anyhow it is not whinge-ing, we are sharing how we feel in a safe environment with others like ourselves. The tiredness is tough but over time it lessens...I in the menopause too, tiredness is part of that experience too but it feels different to the treatment tiredness..I better than last year but I do have to give myself some early nights and late mornings to do catchup.

And ladies all - positive mental attitude to the world is good but getting things off the chest somewhere, anywhere is also good. We have to appreciate that it is valid to be miserable sometimes too. Get it off and out there. And then get on with it!

We are all fabulous hugs oooox[/quote:90xfeses]
Thanks Frankiebaby xxxx Well, I'm off today for my injection... Looking forward to it in a way because since I had the Mirena taken out last week it's being back ache, cramps and bleeding.... And it's being 10 years since I had a period.... Feel like a teenager again!!!!