Life after cancer

This group is for cancer survivors and people who have finished treatment. It is a space to discuss things like the physical and emotional after effects of cancer, returning to work, or trying to move on with your life.

How can my positivity desert me now?

Nilllip
Posted by

Hi all I'm new here...finished my treatment last month for breast cancer. Strange time to be joining I guess...especially since everything went so well. Never been so positive in my whole life......until now. I feel lonely and quite sad, despite being in remission. I used to have a body to die for and suddenly after months of just surviving (and obviously eating whatever i could and not exercising like I used to) I realised I have been left looking fat. My partner who has been super supportive throughout treatment is rightfully tired of having our relationship viewed through the cancer lens and he wants to go back to normality...as a result I feel like I have no one to talk to about the things we used to laugh about (yes we laughed our way through my cancer). I feel so aimless and lost, it's quite frightening for my A type personality 

Sorry for my sad introduction. Just feeling a little down for the first time in months.

Carolyn28
Posted by

it's a shock isn't it

I thought chemo made you thin but no, not for breast cancer, they feed you steroids that make you eat, all those wicked carb cravings.

Fat and bald. great, thanks cancer.

What you're experiencing is the grief process. Shock, disbelief, denial, horror and sadness, anger, dark humour, in some cases, it's a defence mechanism, more denial, more anger, then a sort of acceptance and finally a return to a new normal. 

It's not linear, I was stuck in a loop of disbelief and sadness for ages.

I didn't really ever express anger either. 

I know you looked at the Room, what are your thoughts on that ?  I was diagnosed in 2015 so it's taken me a while to get to that point. 

hugs

Carolyn

xx

 real life success stories to remind you that people do survive breast cancer

https://community.macmillan.org.uk/cancer_types/breast-cancer/f/38/t/115457

Dr Peter Harvey

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

 

Nilllip
Posted by

I lost the Room in my wanderings around this site. I'm usually really good with technology, but struggling this evening on my phone. I'll blame it on chemo brain...I know people here will understand ;) 

If I find my way back to the Room, I'll give you a comment....

As far as how chemo ravages the body...tell me about it! Been trying to get back to my normal training, but the fatigue gets me at the wrong time. To think this time last year a had a real six pack...and I was so proud of it. Now I'm in this constant guilt loop of being too tired, half hearted training and being tired again. What the hell ?!

Carolyn28
Posted by

you're on tamoxifen ?  try a different brand, there's lots of talk about how people react to the different brands

can relationships survive cancer ?

try that 

I know the site can be tricky, could you put a few notes down while it's fresh in your mind, the web team need quality feedback

C

xx

 real life success stories to remind you that people do survive breast cancer

https://community.macmillan.org.uk/cancer_types/breast-cancer/f/38/t/115457

Dr Peter Harvey

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

 

greg777
Posted by

Hi Nilllip,

Welcome to the forum, although I am sorry to read where you are at. The way you are feeling can be quite common when treatment finishes and in many ways the post treatment phase can be harder to deal with mentally as you have more time to process what has happened to you. You might want to take a look at an article by Dr Peter Harvey.  It really helped me when I was at that stage, as it helped me to rationalise what I was feeling at that time. I have tried to put a link to the article below.

community.macmillan.org.uk/.../end-of-maintenance-treatment-withdrawals

Wishing you all the very best,

Greg

Nilllip
Posted by

Thanks Carolyn!! Found it through your link (thought I was going mad !!)

I have my script for tamoxifen  but haven't started it yet. My onc suggested a bit of a break having just finished chemo. I am concerned that it will make me even fatter and affect my mood as I am on antidepressants already (have been for years). Maybe I am being too shallow and spoiled...I know I'm not obese, but compared to where I was pre-diagnosis (I paraded on stage in a sparkly bikini in fitness competitions , much to my Mom's horror)......

I've never been this big in my life

Carolyn28
Posted by

well don't expect instant results 

this is going to be a long slow walk rather than a marathon or sprint and I hope your partner can adapt to this new pace

I had chemo from August 2015 to Christmas Eve and thankfully one of the nurses said you don't have to gain weight, just don't give in to the steroid induced carb cravings 

but then I had a year of Herceptin which meant I had to drag my carcass past no less than 3 Prets and started comfort eating pain aux raisins because they had fruit and fruit was good, right  ;)

Eventually I realised it had to stop, I couldn't do up my jeans and I'm too mean to invest in new clothes, especially if I'm uncertain about my future, I used to wobble on a daily basis but pulled myself together and renewed my annual railcard and pulled my socks up, and gave myself a bit of a kick up the rear.

I now realise that I won't starve if I skip the odd meal.

I'm not a gym bunny by any stretch of the imagination but I upped my walking routine from 6k steps to 10k steps ... it didn't work so I had to compromise at 8k, and recruited my son to get me in shape. 

It is beginning to show positive results, I do feel slimmer, not that I was ever really 'fat' but I was certainly bigger than I ever had been. 

we have to stay vigilant to signs of recurrence or spread, that's life from now on, but it doesn't have to be all consuming 

I think I was slower than most, I wallowed for the whole of 2016, whilst going through the 3 weekly jabs and my hair was starting to grow back, that was bizarre, having to style chemo curls. 

2017 was a bit better generally, for me but then I found out my husband was cheating and that brought a whole new set of games to the party.

2018 was shit, if I'm honest, except that I did treat myself to some nice trips

https://community.macmillan.org.uk/cancer_types/breast-cancer/f/breast-cancer-forum/115457/success-stories---real-life-accounts-of-women-who-have-survived-breast-cancer-and-managed-to-put-it-behind-them?pi5765=3

there should be a holiday snap at the end of that thread ...

and that's not fake tan  ; ) 

xxx

 real life success stories to remind you that people do survive breast cancer

https://community.macmillan.org.uk/cancer_types/breast-cancer/f/38/t/115457

Dr Peter Harvey

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

 

Nilllip
Posted by

Love the holiday snap and your gorgeous bod! 

So sorry to hear about your husband....as if you didnt have enough thrown your way! I've been there myself....although that was many many years ago. The experience was devastating for me and my Mom in particular believes the stress ultimately caused my cancer even though it was 15 years ago. In my case, the cheating husband was my luckiest escape. He really was not a nice person.

Thanks for your reply again. It makes it so much easier for me to read about your journey, spotting the similarities and realising some things are normal. I have set myself up as "wonder woman" cruising through diagnosis and treatment with a killer attitude, expecting it to follow through post treatment AND whip back into my old stage shape with the willpower of the gods within a month, yet here I am drinking wine and eating all the holiday foods. (To be honest my old meal plan of hake and cucumber is not that appetising when wine and BBQ and potatoes are on offer).

I've tried to gym while on holiday, but I've picked up a weird tendonitis in my Achilles...not sure if it's something normal like my shoes causing it or chemo induced, but it's super frustrating!

Thanks for taking the time to write to me xxx

Nilllip
Posted by

Thank you Greg! That article you sent me to was spot on! I've been looking for a psychologist who specialises in cancer, but there seem to be none in my area. This article felt like a good dose of therapy though and I thank you for that. I'm feeling so much more encouraged and brighter today thanks to you and xx

LittleRunner
Posted by

Hello Nilllip, have you looked for a specialist physio or personal trainer who have experience of clients with your medical history?  Like you I take pride in my physical strength and wellbeing, and I eventually realised I could not fix it all myself so got some expert advice. It has really helped.

Nilllip
Posted by

Hi LittleRunner, I do have a personal trainer, although he may not have specialist experience with cancer, he has been very careful to grade my exercise down substantially (while I was doing chemo) from what we used to do pre-diagnosis. My panic is starting to set in though because i want to compete again in May and i just feel so far off that goal. Soon as I'm back from holiday, i need to chat to my PT about goals and where i am.

Carolyn28
Posted by

be patient with yourself

xxxx

 real life success stories to remind you that people do survive breast cancer

https://community.macmillan.org.uk/cancer_types/breast-cancer/f/38/t/115457

Dr Peter Harvey

https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

 

John67
Posted by

Hi Nilllip,

I get what you are saying...totally. I actually finished my treatment (head and neck) nearly 14 months ago, having gone through it with utter determination and a positive attitude. 

Got back in the gym, back to work etc, set myself personal physical goals...all the stuff to show just how a seriously positive mindset can make a difference.

BUT, as you say there suddenly comes a point where there is something of a gap as to the past and the new 'normal'. It is difficult for us not to talk about the 'cancer thing' as it is necessary...it has shaped us, it has challenged us and made us what we are now (for better or worse!) It cannot be so easily forgotten. Yes, we move on and adapt to a new way of life, wherever possible trying to do what we used to do.

I sometimes think that my wife is probably getting tired of me looking back and saying, 'Wow, this time last year I was still only doing X...quite an improvement now,' etc. 

So sometimes when you want to share how you feel this forum is a good place to start. Cancer has b*ggered up our lives one way or another and it is understandable that those who did not undergo the treatment, but still lived it, perhaps want their own lives back from its grasp. None of us wants to be a 'Cancer Bore' of course, but balancing what we need emotionally and the needs of others around us is hard. I actually have a bit of a laugh about things as far as I can and my boys are great quality in that respect.

Remember though, you fought it, you dealt with it and there is nothing to be ashamed of in occasionally having wistful moments about it.  Just don;t let it control you and become a cloud. From reading your post above, I see no danger of that.

Crack on and be you!

J.x

John67

Nilllip
Posted by

Hi John

Thanks for your reply and a little insight to your process. It helps to read that I'm not "abnormal" I am so sensitive to the possibility that I may become a "cancer bore", which is the main reason for joining this community. It's so difficult to not go through a day and compare how you were during chemo  or pre diagnosis or something cancer related.

I'm not ready mentally to go back to being me this time last year (ie pre diagnosis) - I'm seriously scared to go back to work where the expectation will be: "you're cancer free now, so carry on where you left off", like it's the common cold (in fact work colleagues did say that to me on the days I was at work between chemo treatments - they didnt understand why I wasnt feeling well: " you had chemo on Friday  it's now Tuesday?!") - anyway that's a rant I should perhaps leave in "The Room" and close the door on. I certainly dont want to bore everyone here with my own pity party...you're my new friends and I'd like to keep it that way.

So instead...thank you for "listening" and sharing some of your own stories

Xxx

John67
Posted by

Hey no problem at all!

Do remember from a work perspective that you are protected under the Equality Act 2010 in any event (sorry, I'm an employment lawyer ) so the obligation to consider reasonable adjustments etc arises.(plus the full range of discrimination protections). Not that you want to have to fall back on to that, but it's worth being aware of it...in the event of people being d1cks.

I don't think it is easy to go back to being who we were pre diagnosis anyway. Yes, insofar as we can it's great to achieve it, but at the same time there is an imperative of adapting to our 'new normal' - I find that expression quite helpful in order to mitigate the potential feelings of utter resentment we might otherwise allow to cloud our progress.

Oh, by the way, don't worry about a 'Pity Party' complex...you're entitled to feel utterly hacked off from time to time and being disappointed in other people who are unwilling or unable to understand (as they have not been through it) is entirely natural - and in some cases utterly justified! There are plenty of empathetic bods on here who are also capable of lending perspective if and when you feel that a rant is needed! ;-)

We are indeed friends on here; to be honest, I have engaged with some fantastic, inspiring people here which has made my own fight that much more bearable - not least because of the interest they showed and advice they gave so readily.

J.xx

John67