Feeling low 4 years on

This is so me in away ,i have good weeks and bad days ,just feel like curling up sometimes and want silence,then when i feel ok there is nothing there just a void ,the pain in my ribs bring my good weeks crashing down,is this normal ?? i dont know,everybody has different stories to tell,but were still here,still aching,still having 2 naps a day tiring,but were still here,is this the norm are there silent BC people out there just getting on with life in silence,probably there cant be just 2 people.kind regards

Hello you two. I've done 17 years , seven years and now got my third diagnosis. I know how you feel. I had a complete mental break down in year five. People kept saying after five years if it hasn't come back you are " cured". They don't say " you'll be back to how you were precancer" but that's what I think we all assume. Quite wrongly it would seem. I had lumpectomy , radiotherapy and 5 years of tamoxifen. I'm reaping the rewards now of the radiotherapy, the gift that keeps on giving. Back then I didn't realise the side effects of the tamoxifen until I went for a return to work medical. Then I discovered hobbling like an old lady, at 55, and brain fog was the gift from tamoxifen. I had lymphedema in my arm, full node clearance, resulting in me wearing a sleeve. This was hauled on By my teaching assistant on a morning. I couldn't put it on straight after my shower so I'd wait till I got to work. I have spent 17 years trying to massage away the sharp pain I get, I assume thats nerve damage from surgery. 

I am not telling you all this for sympathy. But to reassure you that to have bad patches even four years on is normal, to be expected. To be honest after going through what can be brutal treatment it should really be anticipated. We just don't seem to. The fact that once treatment is finished these days you are left to your own devises doesn't help. I often refer to maternity care to explain the difference between cancer care then and now. 40 years ago it was hospital for a week. Followed by daily visits by the midwife for another week at least. She arrived in full uniform, carefully stacking her outerwear so nothing was left behind. Now your out in six hours and told to get in touch if you need us! First time I was in for a week, drains sorted by nurses. Dressings changed straight after showers. More importantly a week to make close friends with people in exactly the same boat. People who became life long friends you could contact when you felt low.

There things available to you through McMillan and other charities, you might even feel better if you two just privately e mailed each other. I made a friend on here I e mail daily and see when I can. It helps to know you are not alone. A visit to the Gp might even be worth a try. Meanwhile be kind to yourself, tell people how you feel, especially husbands and partners. You have made the first step so keep going now.

Hugs to you both.

Hello, I just wanted to say that I feel exactly the same.  

Hi there,

Redrobin101, I feel the same. I’m not complaining either, but yep, I ache, feel 20 year older than my age, and I cant do many things that I used to do before. Like Silverberg, I have lymphoedema in my arm. But I’m alive, and hope I will be for many more years. I do worry about recurrence, but not as badly as I did a couple of years ago. Since diagnosis in January 2021 I’ve adjusted my lifestyle, to put it mildly. But some of it has been good for me, I have some new hobbies which take into account that I can no longer move around in the way that I used to. And I resurrected some interests that I had previously let fall by the wayside. 
BWBCancer - no, there aren’t just two people. Most weeks nowadays, I am happy, and I have accepted things, but yes, every now and again there are a few grim hours, and I have to retreat from the world for a little while.

Be kind to ourselves. Xx 

I wanna thank you all for replying. Sometimes I feel like I need the reassurance I’m not the only one feeling like this and that it is the same for others 

My whole existence is to make others feel ok and be there for them so I struggle when I feel I have to ask for the same consideration.  I feel like I’m existing and not living. I have a lovely family but I feel unseen and unheard sometimes. 

I’m tired of feeling sad and exhausted. I have a wonderful friend who I walk with 3 times a week who listens to my woes and I am so grateful for her

I have a lot to be grateful for and I know this as so many are still living with this crap disease but the after effects of chemo and tablets and surgery and radiation can be a challenge too.

I feel I’ve lost my old self and that saddens me.

Sorry for the moan  

Just wanted to say a huge thank you for sharing here - am six months out from radiation and 12 months out from full ALND here and was starting to wonder what on earth I was doing 'wrong' as I am SO exhausted and achy - and thats even with doing an hour's daily strength training and walks - and keeping an eye on lymphodema here - thank you for helping me to feel it IS ok to feel as I do - I've found it VERY perplexing to be honest as you are kind of left imagining you 'should' be back to your former self and of course thats simply not the case - I think knowing this at least helps with acceptance (not being moany or negative just it helps to NOT put pressure on yourself outside accepting what you can do to help yourself (diet/strength exercises) and what you can't (magic back your energy levels to order - apparently:) and I have tried:) Very best wishes to you all and much solidarity too - cheering everyone and indeed myself too on here 

Oh goodness , these are all the same  symptoms I’m experiencing, but only finished my radiotherapy in May this year , letrozole started in April. I was hoping it was a post op and recent radiotherapy symptom that would dissipate over time.

ive recently requested bloods tests to make sure it’s the medication etc making me feel like this , sooo fatigued, also having shortness of breath on exertion and heart palpitations , yet to speak to my GP with the results but would appear I’m anemic ! Which could be a result of the letrozole / radiation.

anyone else had this ? Hoping a dose of iron meds might make a difference .

Hello there - well worth checking blood tests with GP - low iron can be a possibility in the weeks immediately after radiation - i found I got quite breathless but it only lasted a short while about 2 weeks after rads then definitely eased on the breathing front - if not on the ever so very knackered front:) your GP will be able to run FBC full blood counts just to check everything for you - its reassuring as much as anything too of course - very best wishes 

Many of these symptoms seem to be common with medications. On Exemestane, at first I was ok, but gradually over a few months I metamorphosed into a 95 yr old zombie. I felt so depressed, fatigued, in pain all over that I just couldn’t carry on. My breast team suggested a break from meds & I felt much better so I made the decision to discontinue it. The original decision wasn’t easy but the increased improvement has reinforced that decision. I’m 2 yrs post diagnosis & although not “ back to my old self” I’m doing ok. Obviously, your condition may not be associated with meds, in which case, it would probably be wise to speak to your breast team.