Fatigue 5 years on

[ElleeB]

Hi I had a left breast mastectomy, chemotherapy and reconstructive surgery five years ago. I had 6 operations in the space of 12 months and am now 5 years in remission. I have completed 5 years on Tamoxifen and another five to do. I have recovered in many ways from the surgery and trauma but I still have major problems with fatigue if I overdo things physically- especially after bouts of physically exertion like cycling longer distances or walking for more than a couple of hours at a time. The fatigue hits the following day and I go down like a lead balloon and become very tearful and emotional for a day or so and then my energy levels come back up. No-one else seems to have any answers to this- including my gp! I am otherwise well. I want to be active and get back to a decent level of sporting fitness and really think by now I should be able to do much more without consequence. Is anyone else out there experiencing these symptoms this far down the line? or does anyone have any comments or suggestions that might help please!

[Mandywilson]

hi ... I had a double mastectomy 6years ago . Followed by chemo and radiotherapy plus other operations .. I also get really fatigued.. I call it "hitting the wall " .. I just think our bodies & minds have been through so much that this is normal .. I have spoken to other women and they are the same ... But there is nothing stopping you discussing it with your G.P Or breast cancer team .. Good luck X keep positive . 💞

[ElleeB in reply to Mandywilson]

Its just reassuring to know that it might actually be normal even after all this time ! I just get frustrated by the debilitating nature of it - I guess I still feel I should be 'better' by now to use a word I hate using! thank you for taking the time to reply -I appreciate it. I am out of country at moment but when I get back I am going to follow up again with it. Good luck to you too and thanks again

[Janet5560]

I'm four years post diagnosis - lumpectomy, node clearance, chemo, radiotherapy, and herceptin - and still get days where I am totally wiped out. I, like Mandy, have heard that this is normal, even 10 years post treatment. It's inconvenient, but I'm just glad to still be here

[anne-57]

I feel for you. I had a lumpectomy followed by four years of fatigue. It went very suddenly. A year later I had a second diagnosis followed by a mastectomy and the fatugue is back. No one really knows why it affects some rather than others.

This time round I had help from an occupational therapist which really helped. Her best advice us to rest before your energy tank drops below one quarter. You will then rebuild energy quicker. It really works but is trial and error at first. I plan out how I use my energy which helps too. Work with it rather than fight against it. X

[ElleeB in reply to anne-57]

Working with it rather than against it I find hard - but I think its going to have to be my way forward. I am not sure my tank ever gets as far as a quarter full in the first place. Now I am taking a break from full time work maybe I need to be kinder to me and try and be more accepting of the situation and stop trying to get back to where I was before.

[anne-57 in reply to ElleeB]

Accepting that you have a new "normal" is hard without a doubt. I used to keep going until the ironing, cleaning or what ever was all done. Now I will iron for a set time and then sit down for a while and only if I feel ok get up and do more. I just break everything down into chunks of time. That works for me.

[Artemis-angel]

I have had 5 years of tamoxifen an zoladex and a few months now of letriozole following. Mastectomy and reconstruction. I get the same problem the day after a really energetic day, though probably less frequently.

[elainemaria]

congratulations on beating c. you have had a major trauma and you need time to adjust your exercise routine. cycling and walking for 2 hrs is great but i feel the effect the next day is not worth it. so look at different exercise. like yoga or dance. keep trying maybe tai chi or just slower walking. there will be exercise you can do. i am 15 months post chemo but having more surgery on monday 21st. i get really tired most days. i try to eat well and light exercise. i havent put weight on since my journey began but do feel weaker. once my surgery is over i will resume swimming. enjoy life i say. but also review your medication or see a dieticion.

[Mandywilson in reply to elainemaria]

I love tai chi .. Brilliant for mind & body ... Xx

[GinaD19]

Hi ElleeB, I am in a similar position. I had a right breast mastectomy 4 years ago after they diagnosed grade 3 breast cancer. I had chemotherapy but not radiotherapy and am now taking arrimedex daily for possibly 5-10 years. Following chemotherapy, which left me exhausted I had fatigue counselling and was told to pace myself, advice I don't always follow. Since then I have had a second, elective mastectomy and two reconstruction operations. I find that it is harder to recover from each operation and feel tired all the time. I now go walking for at least an hour every day. I don't always have the energy to go out but I feel better for doing it. My cousin took Tamoxifen for 10 years and told me that the difference was incredible when she stopped taking it. She stopped feeling so tired and slept through the night! It's something I look forward to every day I take my pill but the pills help prevent the cancer from returning so I will carry on taking them. My advice to you would be to pace yourself. Do some physical activity every day but don't do nothing for a few days then several hours one day as your body will make you pay for it. Also, listen to your body. If you hit the wall just rest for a few days and start again. I'm very lucky to have a supportive husband who understands that I am not swinging the lead - sometimes my body just won't do what my brain wants it to! Onwards and upwards!!

[ElleeB in reply to GinaD19]

Insomnia is a major problem for me too - and that doesn't help either. I think I have not paced myself well or accepted limitations well since my diagnosis. I am trying the hour a day routine and yes that seems to work to a degree - but I yearn to do more. I used to walk for hours on end and now the price is just too high - because as you say body wont do what brain wants it too. I am on my own and tend to be hard on myself and I clearly need to not to be. Thanks evers so much for getting back to me. I have had a brilliant response and its just so reassuring

[blue_sky1]

Hi Ellee, I had the works as well (several ops, chemo, rads etc - nearly 5 yrs out). I have totally changed my exercise routine and now do much gentler stuff - mostly Pilates and walking the dog, both of which help to clear my mind as well as demanding less of my body. For me fatigue is linked with stress, so daily light exercise that also helps my mind slow down is a great help. I also like acupuncture. The need for support both physical and emotional doesn't go away after cancer treatment, and it sounds like you need to top up your tank. Best of luck!

[footprints]

Hi Ellen

I had left Breast rec, chemo, radio, hysterectomy, and been on tamoxifen 3 years this July, I too do a lot of walking, gym bodybalane, love to keep active, but like you I suffer next day completely exhausted to the point of staying in bed, then I'm fine till next time, they are now saying I too should take it for 10 years, but don't think I will I'v been put into early menopause as well and can't take anything for it! Just want to be back to my old fit self, it's very frustrating when your trying your best, keep strong so pleased for you, 5 years, it's very uplifting to read, well done,...can I ask do you take any vitamins? X

[ElleeB in reply to footprints]

When I remember I take the odd multi vitamin but usually I forget so its just Tamoxifen and calichew for thinning bones - another bi product of treatment! Think hard about not taking Tamoxifen for 10 years - Its put me in the menopause too and that absolutely sucks - the hot flushes are severe and I cannot tolerate alcohol at all - and as for sleep well I have forgotten what that is . However, I am under no illusion Tamoxifen is my best chance of keeping the cancer away so if I have to take it for 10 years - which is the plan then I will. We are lucky we are alive and still fighting and many dont get this far. I am 53 now and as I said travelling round Argentina - fatigue or no fatigue Its time to live a little. I am only learning now after 5 years that my old self is gone .. I dont much like the person that has been left in her place in terms of health and mental well being so I am on a mission now to create a new me and find a new way of living. Its a challenge but I am certain its possible - cancer cannot define us. Good luck with everything and stay positive

[Rattyp in reply to ElleeB]

I totally agree with your comment about you are not the old you, that's exactly how I feel. I keep saying I want to get back to being me and my friends say I am but, no disrespect to them, I will never be the same person again. I now have to find and get to like the new me, warts and all. Good luck in your journey x

[Angelmummi]

Don't take this wrong but it is so good to hear someone else say this. I am now nearly 10 years post diagnosis I had 5 months of chemo followed by a left mastectomyand Radiotherapy then 5 years of Tamoxifen then something different for a few years but now I am back on Tamoxifen. I find that I get tired easily and it is made worse by the fact that others think of you as 'recovered' by this stage. My daughter did a bit of research and she thinks it is linked to the Tamoxifen and to be honest I did feel better in the 2 years I wasn't taking it.

[Jillyannepope28]

Hi I have been on tamoxifen for 5 years also just about to go on letrazole , I know exactly what you mean about feeling fatigued , I have lost weight on slimming world eat healthily and work full time as a career and when I have finished my shift I feel like I have been run over by a bus lol it takes me so long to recover and feel washed out , not sure why either , just hope things get better on new tablets ,

[ElleeB in reply to Jillyannepope28]

Let me know how you get on on new meds! Well done you for holding down full time career. I was working full time til a few weeks ago but just could not handle it. I was washed out and exhausted at the end of a 40 hour plus week.

[ElleeB]

I am sure its Tamoxifen! and it really is other people who look at me and think I should be 'better by now' that make me feel I am in someway unacceptable because of itthat drives me insane! I appreciate your reply - males me feel normal!

[showmustgoon]

Hi

Im not sure you ever stop feeling tired though not to the extent you describe. I was unable to manage the exercise you describe but I go for very long walks with the dogs and when on holiday. I describe teh reason as Chemo as sucking the energy out of me!

 I have found  taking Ginseng and vitamins helpful (might be psychological) and getting plenty of sleep when not working. I keep away from triggers of stress when I can. Im still here after 18 years despite many scares so I just focus on the good stuff and the immediate future. If I have an energetic day - I know I will need a nap to recover - but everyone is used to this now..

[LaineyG]

I was very unfit and overweight prior to my treatment in 2014. Since completing radiotherapy, herceptin and chemo I have never had any energy, I struggle to complete the smallest of tasks in the house, I work full time all week and could sleep my life away at the weekend. Some of me knows this must be related to bad habits and being lazy, part of it is related to depression for which I have been medicated for a number of years but when it's a struggle to climb the stairs and any bursts of energy result in feeling lightheaded it's even hard to try and build up to doing more- I feel like I need a stick of dynamite to get me going, have so little energy or motivation.

[Oreo78]

I was going to ask you what to do?! I am 4 years on and also feel the same, that the more I take on, the impact that is has on my body is greater. I feel a sense of loss as to the person that I used to be and can't find myself and I don't like this new person. I have had to drop things which hasn't been easy for me, as I used to do so much before in my life, and now I am unable to do things, so I am like who is this person that I have become? I have to continually readjust my own expectations of myself and I read about fatigue and it says one has to have realistic goals as to what they can do. So that is what I try to do, but I find it debilitating. Recently I have to let go a course that I really wanted to do which caused me a great upset but I have no choice due to the state of my body and the way that I feel. I feel a great deal of loss and questions over my future and present existence. I have no answers does anyone else??

[Usernameunavailable]

I've been remission now for 5 years and still experience fatigue. I've stopped fighting it now I've been able to retire and I've made some life-style changes that I enjoy. The biggest help to me is meeting other women who experience the same issue, and supporting each other in managing the fatigue. So thanks everyone for being here and writing about it.