Fatigue 2 years after treatment!

Does anyone else still have fatigue post treatment?

It will be two years this Christmas since I finished treatment and each day I hope that I’ll wake up with some energy and each day I’m disappointed.
The smallest things tire me out - doing housework, going for a walk etc. If I have a day out then I’m completely shattered the next day.

I don’t feel I have any semblance of a normal life and I feel like a freak. Surely most people are okay by now?

I’ve spoken to two Oncs. One said to exercise every day which I do and it hasn’t helped. The other said it could be the tamoxifen but I can’t come off it.

I did have a very hard time through treatment getting extremely ill on both FEC and then on Tax and lots of other complications and I wonder if that’s something to do with it.

Am I alone in this? Elinda x

Hi Elinda45

Sorry to hear you are still suffering from tiredness. You mention the hard time your had with treatment - what you have gone through leaves a huge impact on your body.
I dont have any medical knowledge to impart but we are all individuals and recover differently.

Have you tried any complimentary therapies such as reflexology, acupuncture etc? Horses for courses and all that, but I feel I benefit from acupuncture from a sense of well being which includes improving your energy levels.
How about meditation/relaxation to improve energy.

On the housework note - if this tires you, let someone else do it!

Sending you some virtual energy…
H

Hi elinda yes I’m Th same nearly 2 years to being diagnosed and still hav no energy iv been shopping today n now sprawled on sofa shattered it too was I’ll during chemo was supposed t hav 4th n 4 tax but was too I’ll so Onc changed it to 6 fec only iv since got lymphodemia in breast n having sum check ups for headaches but I worry Tht being so tired cud mean it’s come back n my body’s struggling hav tried goin t Th gym but wipes me out for Th rest of Th day. If u find a miracle cure let me kno!!! X rozita

Hi Ladies

Fatigue is normal both during and following cancer treatment. Macmillan have some useful information and advice on the subject which I thought might be helpful to read.

Here’s the link to the section on their website which deals with this common side effect:

macmillan.org.uk/Cancerinformation/Livingwithandaftercancer/Symptomssideeffects/Fatigue/Fatigue.aspx

I do hope you find this useful.

Kind regards.

Louise
Facilitator

Elinda,

I feel just the same; I look forward to going to bed because I am convinced I’ll wake up the next day feeling ‘normal’ - and it doesn’t happen. People say I look good, but I am fighting all day to keep going. I have given up exercise as I think this is causing more stress to my body and have decided just to do what I feel like and remove the ‘should’. B*ll*cks to 'you really should do X,Y,Z!

I have decided that it is wintery and getting colder, so I am going to go with how I feel and hope that in Spring I will start to recover. My journey started with an mx October 2009 and treatment finished in August 2011 and still on Herceptin and Tamoxifen.

I’ve never fought cancer; it has always been the fight against the drugs and this seems to keep going. So I will be a tortoise for a bit; give in…and will start making an effort again in Spring.

Love to all fellow tortoises
Annie

Feel exactly the same Elinda.
2 years in December since diagnosis and I too had an eventful treatment journey. FEC/TAX with 2 episodes of septicaemia, painful arm lymphoedema of non cancer side secondary to the FEC, and oedema of face and head from the TAX - a real mess.

I too look forward to going to bed hoping I will feel better the following day. I am generally disappointed - I try to exercise - swim walking mainly but often it is a big effort.
I find the reluctance on the part of health professionals to monitor with blood tests etc very difficult to cope with.

I also feel the tiredness is different from the pre cancer tiredness - at times I just get a feeling of overwhelming fatigue which is completely unrelated to exercise.

Thank you H, Rozita,Annie and Winnie for your responses. Thanks Louise for the link - I found watching the video clip helpful.

I am very sorry that others are having similar problems to me although it does make me feel less alone. I do think that having problems during treatment and other health issues like headaches seems to be a big factor although I’ve no evidence to support that!

I think what is difficult is that people who haven’t suffered from fatigue think of it as just feeling tired. For example, when I said to my neighbour that I had to have a lie down in the afternoon last week she said that she couldn’t possibly do that in the day time.
Fatigue is so overwhelming that it becomes impossible to function and even the doctors don’t seem to understand. To be fair I barely mention it because there is nothing they can do.

Rozita, I’m also having a lot of headaches which I find are much worse when I’m fatigued - although it could be the other way round! The last Onc I saw thought my symptoms were either hormone related as I’m perimenopausal or the tamoxifen.

I haven’t been able to return to work and as fatigue isn’t really covered by ESA, it means our household income is quite low now which is another worry.

H - I tried acupuncture for several months and used my savings to pay for it but it didn’t do a thing unfortunately.
My diet is incredibly healthy and I go for a walk each day. Not sure what else we can do?

Elinda x

Have you tried perhaps a gentle yoga class or some meditation? I’m 3 years beyond Herceptin (diagnosed 2006) and I still get episodes of fatigue, usually ever couple of months or say. I sometimes have to have a Saturday in bed on account of this, I just read and watch TV. I find yoga really helps with this. You don’t need a lot of room for yoga, so if you don’t want to try a class there are some good basic DVDs out there. I got one for a fiver in a local shop. I do a 90min class on Sundays and I do find it gives me an energy boost. One lady in my class had ovarian cancer in her early 40s followed by breast cancer in her mid 40s and she swears by it.

Hi Cherub

I did try yoga last year and you’re right it really does give you a lift. It also was helping with the shoulder pain. The problem was I damaged my achilles during a yoga class and it’s taken a year to get better. I don’t feel I can chance it again.

I feel like I made a complete fool of myself today. I rang my BCN to talk to her about the fatigue and felt such an idiot afterwards that I wished I hadn’t. I’m worried now she’ll tell the consultant and they’ll think I’m just nuts or something.

I did ring the helpline afterwards and burst into tears. The person I spoke to there was lovely and listened to me which was all I wanted.

Elinda x

Hi,

I just wondered if you had been checked for anaemia or thyroid problems as I know both of these can be a result of treatment/hormonal changes. I have just found out I am low in b12 (which again I think can cause tiredness) which is probably because my gut was wrecked by tax and I’m not absorbing things properly. I have to say my doctor was very good when I felt really run down and it was her idea to do some blood tests just to check.

I am also on tamoxifen and although chemo has so far made me menopausal I am still going through a hormone cycle. On top of general tiredness I find for about 5 days of that cycle I have absolutely no energy, sleep during the day and have to be in bed by 7, so I guess there is a hormonal side to it as well.

Good luck and I really hope you find some help,

Susanx

That was unfortunate about the yoga. The first class I went to was about 18 months after my diagnosis. It was adapted for people with all sorts of things like mobility, muscle and joint problems and a lot of ladies who went were late 70s. I was the youngest by at least 25 years, but at that point I wasn’t bothered as I had all sorts of joint and fatigue problems stemming from being on Taxotere. It would be good if you could find a class like this, but remember that yoga is not about pushing yourself. My current instructor is a bloke and he reminds us every week just to work within our limits. He has a bad back and there are some things he just wouldn’t attempt.

Susan - it could well be linked to hormones too. My oestrogen level has been up and down like a yo-yo since chemo. I was also on a very high dose of progesterone for about 15 years prior to BC to help treat my endometriosis and I think the amount and severity of headaches has dramatically increased since I stopped that.

Cherub - not that easy where I live as I’m out in the sticks. We also only have one car (no option financially now I’m not working) so I can’t get to anywhere. It’s a nightmare even trying to get to the GP surgery.

I do like the idea of meditation though which I’ve done before and I could do at home. Thanks for reminding me about that.
Elinda x

Elinda45

I was given a relaxation/meditation CD as part of an info pack by my BCN.

I assume it is given to all ladies in our position? But maybe not. Worth asking about. It is published by The Haven.

Can give you more details if you want (was free btw).

H

No I wasn’t given anything like that. I’ve used The Haven website for my lymphodema exercises and I’ll contact them about the CD. Thanks for that. x

Elinda, try Googling for Jon Kabat-Zinn. I was given some of his meditations by the local Maggies and I now have his books and a talking book of his stuff. I have the mindfulness meditations on a CD and I put them on my iPod, they are really good to dip in and out of, especially the one called the Body Scan (my OH likes this one as it gets him focused). There are also some by another guy called “10 minute meditations for busy people” that I think you can get both on CD or as a download (try Amazon for the CD).

Check out some of the yoga sites online as well as you can get yoga sessions you can watch and follow on your computer screen lasting 10 mins or so and sometimes it’s nice to be in your own space. I’m just lucky in that my local gym is within walking distance and my class is there - I don’t drive so it’s a pain getting to anywhere else and most of the other yoga classes are on an industrial estate in the next town, so I would never get to them. I keep a gym ball in the corner of my office as well, it’s good for core strength and flexibility.

I will Cherub thank you. I like that whole concept of mindfulness and I think that would be good for me.

Hadn’t thought about yoga online. I could do some upper body stuff and breathing stuff with that.

My BCN didn’t have any ideas except exercise which I already do. Thank you so much everyone for sharing other ideas. I’m so grateful that people take this seriously and have taken the time to respond.

The person on the helpline also had a suggestion which might be good for others to. That is to have a proper rest two or three times a day for about 20-30 minutes so you can still your mind and body (I’m thinking now that could be meditation time). Apparantly some people do that who have ME.
Makes sense to me as it might stop that complete exhaustion later in the day.

elinda x

Hey Elinda!

Yoga definitely helps - I personally prefer buying a copy of yoga DVD rather than downloading clips onto the computer as I prefer watching demonstrations on TV. Under a friend’s recommendation I bought and used “Yoga for breast cancer patients and survivors” DVD from Amazon - it was really good - lots of emphasize on mindfulness in the DVD with breathing and gentle stretching as well.

Hope this helps!

Julie