4 years after breast cancer..

[Treatedlikeamaid]

Still awake all night with cold legs and sore feet. in morning I feel like I’ve been run over by a bus. By afternoon my body feels really heavy and exhausting to move. What is it. Can’t help wondering if Chemo related?
I can’t find long term effects of chemo anywhere - but it must do something? Can’t believe you just heal totally.?

Sorry I don't have any answers Treatedlikeamaid but didn't want to read and run. Hope someone with some knowledge comes along soon.

Treatedlikeamaid What type of breast cancer did you have and what chemo if you don't mind me asking? I have some experience and might be able to help.

I do know that chemo, especially the really strong ones like the Taxols cause changes on a genetic level. Some people are left with permanent damage depending on the treatment. So some cause nerve damage others heart or other organ damage. For the majority of patients side effects do eventually get better though and it's only the minority who have long lasting damage.

There's a good forum on breastcancernow.org where you can chat to others in your situation. Also, there are nurses you can ask for advice too. Have you spoken to your team or have you been discharged?

Also, there's a long running thread that might be helpful for you.

www.mumsnet.com/Talk/general_health/3941767-Cancer-support-thread-75-come-on-in

Thank you so much guys. Thanks older, for bothering to write. It means a lot! And thanks talking. Don’t actually know what treatment I had - I’ve blanked it and thrown away all the paperwork, probably not the best thing to do! But I couldn’t handle it. Will try your suggestions. Thank you - it’s a very lonely making disease as I’m sure you all know, but I’m very lucky that’s for sure. X

It’s very common, I feel like I have the body of an 80 year old and joints very achey particularly in the morning. Ironically going for a run helps it go. I think tamoxifen is the cause for me as reduction of oestrogen can cause these symptoms. I also get extreme fatigue every few months and cannot even get off sofa to make a drink. Not easy as I have 4 kids and no let up 😟

Ps I recently threw away all my paperwork and can’t really remember anything from when I went through that hideous time. I think anxiety can also make you tired and whilst I keep it at bay most of the time it can occasionally the panic of it coming back can overwhelm me

Oh why! I’m so glad I’m not the only one that threw away the paperwork. It certainly wasn’t all pink tee shirts and running marathons at this end! I think you may be right that it’s tamoxifen , certainly feel like I’ve been run over every morning too. Total sympathies with the fatigue. Sometimes crossing the kitchen to stick a pizza in is just a Herculean task.
The panic is quite a thing too, I had incredible anxiety and total depression, did you? In the end a LOT of counselling, mindfulness and a mad hypnotherapist kind of got it under control.
It’s RIDICULOUSLY hard! Well done us. Xxxx

It makes me want to throw up when I see anything pink and b.c related, the experience wasn’t bloody pink in any respect!
Tamoxifen has loads of random side effects but it’s keeping us well so just have to keep taking it. I read somewhere that it’s more effective than chemo. I recently started very gentle yoga (an OAP class!) and it has really helped with the aches.
I saw a psychologist at hospital just after treatment but had top up counselling this year and that really helped. I just freak out occasionally when I read something b.c related or anything relating to possibly not being around for my children but have coping strategies now.
But yes, we are here, we survived, and incredibly grateful for the good fortune of that and the wonderful NHS that saved my life x

Ps chemo literally poisoned us to get rid of the b*stard so agree it has to have long term effects like exhaustion, weird symptoms etc. I get tingling around my body, aches, menopausal symptoms, fatigue etc etc! Joy!

Oh and a couple of ovarian cysts!

Ha! Nice to hear from you. I’ve got the cysts too but no one seems bothered! It’s mad isn’t it. Now we feel crap, have one bosom, one sort of bosom ( implant , nothing like Katie wotsit) (What did you get? Myfriend showed me pictures of her friend in LA who now has 2 amazing plastic bosoms. Mine are definitely NHS! )dodgy stuff going on downstairs after an 11lb baby..and we are STILL supposed to be sexy. Cup of tea and a digestive for me please!

I will have a biscuit too! My husband commented the other day that he still has the same waist size that he did at 16 (annoying) and it made me think of all the horrors my poor body has suffered, natural births of 4 babies (one 10lb), one miscarriage, breastfeeding 4 babies, chemo, mastectomy, radio and now tamoxifen and chemical menopause. Doesn’t seem quite fair does it?!
I had a double mastectomy, one boob needed it and just wanted the other one (which was fine) gone as the buggers tried to kill me. I had an immediate reconstruction (all on NHS) with implants and the pigs skin supports (!) and they are actually okay all things considered. I don’t have to wear a bra which is nice and lazy. But sleeping on my front is like lying on two balloons! The local hospital offered nipple tattoos too which aren’t too bad.
Not a sentence I ever thought I would write 😆

Feeling sexy definitely gone out of the window!

Hi I’m also 4 years post diagnosis. I had a mastectomy but thankfully no chemo however I’ve been on Tamoxifen since my surgery. I’ve struggled with various side effects including low mood, anxiety, aching joints and get very easily tired. I only work part time but it wipes me out. Breast cancer changed my body but has also changed me as a person. I am no longer the strong confident happy go lucky optimist that I used to be.

Omg whydoi. I totally feel for you! Not a sentence I thought I would read!Nipple tattoos! It’s mad isn’t it! Have you seen the plastic nipples they can stick in? Pig skin supports eh? Why dont I have them?! I got the dented tennis ball someone found in the car park.😀
hi missy b it’s so nice of you to write. And it’s very nice to hear from someone 4 years into it. We are all supposed to be recovered and just dandy, very nice to hear from you - it means I’m not somehow failing.
that’s rotten. And exactly how I feel too. It’s exhausting!
I also wonder how I’ve not got the energy to do much - the house isn’t going on Pinterest any time soon. Unless we start an alternative Pinterest.
I’m with you on the strong, lucky, happy optimist disappearing. It sucks. It’s very very hard to lose that. Do you still get ridiculously anxious about the simplest things? I’m sure there’s a strong happy person in there still, she’s just hiding!
Have got my check up on mon. It’s a wierd time isn’t it.
🥂👍🥳 to us. We are stronger than we know. There should be a statue.

That was a lot of ‘I’. ‘I’ don’t mean to sound self obsessed!

P.s, thanks For the tip why. Am going to get back into yoga. X

Good luck with the check up Treated, it’s always a weird mixture of fear and reassurance.
Missy, nice to hear from you, I think we can all say that this experience has been bloody awful.
After my recently counselling I completely redecorated my bathroom as this is where I noticed the lump in the mirror and felt sick. Anyway I chucked mirror in the landfill at the top with vengeance, it smashed and will be satisfying and I painted the room and moved things around. Bizarrely really helped!
My happy optimist personality has come back (most of the time) but took a lot of work. I think that the diagnosis at the time could have been worse (e.g 2 weeks to live) so now I am 3 years down I am really grateful for all these extra years with my children. I make a note of nice things that have happened since that hellish time, and even tho we don’t have much spare cash, I’ve taken the kids on a plane, been to the Ritz and generally trying to make the most of this time that modern medicine gave me. But that’s not to say that I don’t have horrible anxiety here and there, and quite nervous at the moment as it would be bloody awful if it came back now.
Here’s sending you both a hug x

Thanks! It is and odd day. I combine it with a treat coffee and mooch round the shops, think I deserve it! well done, I think you have a terrific outlook - I like your mirror story, Bet that was one good crash.think I need a bit of that here - I was putting on coat and hat that dp bought me At the time To keep me warm, and realised it makes me feel yuk, but I can’t chuck it out as it’s too good. Maybe I will chuck it out now. It makes me feel awful.Awful thing. ..and it is 4 years old, sure some people would chuck it for being hideously old fashioned😃
It’s wierd how your mind works, I painted a picture while getting chemo, and noW it makes me feel Physically ill when I look at it! And yes I do that too - , I keep a little book of all the nice things that happen each day. I love that you have taken the kids in a plane and stuff. Makes you really treasure being with them. We have a lot to be thankful for. 💐

Hi I’m almost a year post chemo and still can’t walk unaided. My hands are also still incredibly sensitive with neuropathy.

I recently gave a £300 coat to charity as it reminded me of chemo. There are things I can’t bear to eat, watch, wear, listen to, look at because of chemo. I feel like it’s some form of PTSD.

I also feel like there’s a general perception now that chemo is not that bad anymore because of improvements in medical science etc etc.

For me it was like the living death and so traumatising that I can’t think about it. I’ll never be the same again, physically or emotionally.

Chemo was a living nightmare. Everything about it was utterly awful and traumatic apart from the lovely kind nurses. I wore my favourite wool jumper to my treatments and afterwards it just reminded me. So I took it to the charity shop and bought exactly the same one again on eBay. It was still my favourite jumper but not the one that lived and breathed that time in the wards. Probably sounds really weird but worked for me. I can’t eat certain food that I could only stomach during it, when I drive past the hospital I feel sick, when it’s the anniversary of the diagnosis I feel sick, just everything was so traumatic. It IS ptsd without a shadow of a doubt. One single moment of finding a lump or getting diagnosed is as bad as standing on a IED, your whole life as you know it explodes in one single second and nothing is the same again. Summer, if you haven’t had counselling I strongly recommend it, and if it doesn’t work, get another one as it’s very much how you fit with the person. I got mine through the clinical psychology department at the hospital and a local charity xxx

I hate that I didn’t look like a glamorous bald woman or arrange charity events or run marathons or feel like I’d come out stronger and fighting and ready to start a new venture or have jaw dropping epiphanies.

I just...just that nausea. That throwing up for months on end. Looking like a folded up skeleton in a wheelchair or a moon faced steroid beast. Pain, bleeding, mouth one giant ulcer, neutropenic sepsis, fainting, blood transfusions, feeding tubes. So much boredom. So much hellish torment.

I have been irrevocably changed. I had oddly hoped that if I got through it, I might feel mighty. I feel traumatised. Deeply. Xx

So sorry you feel like this Summer and sending you a (Covid safe virtual) hug. If you haven’t had counselling then do think about it if you are feeling so deeply traumatised. I got ‘more fixed’ after my second round about 2 years post diagnosis when my brain was a little calmer and could process it a bit more, but it was very therapeutic just to cry it out to someone and someone acknowledge that it was just really shit....

That’s true, why. Just being able to say this is shit and be acknowledged. That whole glamorous bald woman marathon thing is deeply misleading and utter crap. So is all that ‘warrior’ and jaw dropping epiphanies shite. What you are feeling is awful , and apparently totally normal , hurrah.
I found Maggies Center to be very useful if there is one near you, also Mac millans. They both offered me free counselling. I was an idiot and thought I didn’t need it, but that’s one of the things about cancer, you learn to challenge what you think you knew, and learn to ask for help.like why, I found it helped, sort of. So did doing a mindfulness course. Maggies was the best, they offer a post cancer course, where you learn to cope in a group and share. The best thing I learnt, which may be useful was, like why says, crying it out helps. if you feel like crying, even if you are driving, pull over, and let yourself cry as much as is possible.As often as possible. It releases all sorts of good chemicals. The other thing was take deep slow breathes, it makes your body think you are relaxed so you stop producing adrenaline.
Also, if you are like me, you are beating yourself up - it’s nearly a year! Why don’t I feel better?! I must be crap! ( hope you aren’t!) I now know a year isn’t long for this. You will feel better, it will fade.
Am so with you, ahh the joys of neutropenia sepsis! I had it 4 times ffs. And fainting, and not another bloody needle!
You have been irrevocably changed. I don’t know how you get to feel mighty, maybe someone else can advise. And I don’t know how to get over all the colour and life draining from the world ( do you get that?)
You’ve both cheered me up with your coats and jumpers. £300! Respect! I am definitely chucking that tatty old olive green Parker tomorrow. I just realised, I didn’t choose it, I don’t like it, it makes me feel so..worthless somehow. Like even tho I’ve been though all that I’m not worth anything nicer.
Summer, you will get through this. The whole thing is a marathon without going and actually running one, and you are getting out of it step by step. Massive covid safe virtual hug as well .

Bugger, am still awake at 5! Check up today, always gets to me more than I anticipate😀💐💐💐to us all!