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Tamoxifen-Tiredness-Medical Evidence?

14 REPLIES 14
BeeB
Member

Re: Tamoxifen-Tiredness-Medical Evidence?

Once again thank you all for your support.
in fairness to my line manager and work colleagues they were all 100% supportive from day one of my diagnosis and I could not have asked for more support. The problems have only arisen since I have been back to work, obviously seen as fully recovered. the day suggested for me to take is more to do with the fact one of my work colleagues works a long day that day, her choice to fit in with child care , which seems my work life balance has to fit in with her child care ! Anyway , still no HR dept so any decision is in limbo .However I had to come off Tamoxofin for two weeks prior to some reconstructive surgery I had this week and have to stay off it for another two weeks so I'm actually feeling a little more alive !! Previous surgery was cancelled and I was like a zombie again for the first two weeks when I went back on it so I'm making the most of these next two weeks and just see what the future holds! Any decision I make has to be for my benefit and not for the company who are actually quite keen to save so money by me reducing my hours
thanks again all of you
Maire
Member

Re: Tamoxifen-Tiredness-Medical Evidence?

I have been taking Tamoxifen for just a few days short of a month and am absolutely knackered. It is a full body and brain tiredness. It is definitely Tamoxifen as I delayed taking it until after chemo then rads then a holiday in Rome when I walked everywhere. I just hope it lifts because I will not commit to 5 years of feeling liike this.

pollym
Member

Re: Tamoxifen-Tiredness-Medical Evidence?

Dear BeeB

I have posted elsewere about my experiences of giving up Tamoxifen which i finished in October 2012.

Since stopping i am able to look at changes in how I am feeling and see what was down to Tamoxifen.

Tiredness was one of my worst problems and this was caused by poor sleep - some of this brought on by hot flushes which in turn were brought on by Tamoxifen. I no longer have hot fluses! I woke up continually in the night, sometimes with hot flushes and sometimes with no known reason. I now sleep like a teenager! I can sleep in! But once I am up I am refreshed and no longer feel the need to nap during the day which i was a devil for given the chance! I used to feel literally exhausted - and this was obviously years after chemo.

So personally I know that Tamoxifen contributed to my tiredness but for me due to the quality of sleep it introduced. Interestingly whilst on chemo I was also tired but I would sleep for 12 hours straight at night with no wakefulness!

Anyway, hope you feel better soon and can find some work life balance which works for you.

Take care,

Polly x

elinda45
Member

Re: Tamoxifen-Tiredness-Medical Evidence?

Medical evidence is hard to get and you won't have the type of thing that would support your argument of needing 3 days off in a row. Your tiredness could be multi-factorial ie. not just tamoxifen but the cummulative effect of all your treatment. The fact you didn't take time off during chemo doesn't mean that it isn't affecting you now. It sounds as though your employer wants to be reasonable. Have you actually asked them why it is not possible for you take Fridays off? You could say that you've done this until with annual leave as having 3 days gives you a good recovery time.
The important thing is that you find a solution that works for you. You could try what they suggest and make sure that you have Weds as a complete rest day. That will be the important thing and not get distracted with things that need doing in the house etc. But, if you are feeling so exhausted that you are taking three days to recover then quite honestly it might mean that you have to drop down to 2 days per week (and that way you may be able to work the Friday if that's a particular issue for your company). The company may not like that so you'd need to see how disability law stands on all this.
It sounds like you definitely need some expert advice and help with the legal side of things. I think Macmillan might be a good bet on that. If you ring the general helpline they may well put you through to a specialist adviser. Another option might be your local Citizen Advice Bureau or you could ring the BCC helpline to see if they have any ideas. I totally agree with Kes that a union rep would be a good idea if you have one. Failing all of that you could find a solicitor who specialises in this kind of thing.
Are you ensuring that you are getting enough rest in your time off and not pushing yourself or feeling pushed to do too much? It's easy on a good day to start doing too much and then feel shattered the next day. You're in very early days of recovery.
Elinda xx

kes_1
Member

Re: Tamoxifen-Tiredness-Medical Evidence?

Hi Beeb sorry to hear to hear your having such problems I'm planning on returning to work next week ,on a phased return I found occupational health at my place of work very good and have been provided with different options I could try once back in workplace I also have a supportive line manager which I believe makes all the difference and who I have been in contact with from my diagnose (I'm employed to work 4days a week , 24 hours a week ) I plan on working no more than 2 days together And hope to use up annual leave to facilitate return ( 4 wks annual leave carried over from last year ) I have not really experience much tiredness but no doubt that will change once I'm back at work. And should I encounter any problems I will drop a day . Are you in a union if so you could contact union representive who would help you with your case .. Kes x
BeeB
Member

Re: Tamoxifen-Tiredness-Medical Evidence?

Hi Jane thanks for your comment I'm glad someone else feels the need for and benefits from a three day break, I was starting to think it was just me.
im still struggling with full time, sleeping most of the weekend to have the energy to work the following week, certainly not good work/life balance but because I didn't agree with my line managers suggestion HR now have to be involved, and presently we don't have a HR dept !!
what really annoys me is the line manager telling me what day she thinks is best for me when she has no idea how exhausted I am ..............busy weekend, felt so tired all day today, my eyes are hurting and struggled concentrating ............just feel like bursting in to tears.....sorry needed to get that out of my system !
Jayne_m
Member

Re: Tamoxifen-Tiredness-Medical Evidence?

I work part-time and have Mondays off which gives me the three days in a row - I cant have Friday as someone else has that pattern but it works just as well having Monday and it is a great feeling on Sunday night that I have the next day off.

Jayne x
rosebud50
Member

Re: Tamoxifen-Tiredness-Medical Evidence?

Dear BeeB

Can I gently voice a different opinion? Why not work 2days, rest a day and work 2days? Have you tried this? Surely you would not be as tired on day three, so better for work on day four and five? ( or so argument goes )

I can appreciate that you want to get your life back and loosing money is not good. however, employers struggle to balance requests for everyone to have three day jolly weekends leaving full timers tired and over worked never getting a Friday.

in putting your case, maybe you can ask why they think a random day will help? Or is a Wednesday for a reason, as suggested above? Why do they not want you to have a Friday? By getting a dialogue going, can there be room for negotiation and flexibility on both parts?

I was advised about going part time to make sure someone took over your work. If not you end up doing full time in part time.

I would like to think all employers would be open to dialogue and reasoned explanations but know this Is hard to find.

good luck with your review and i hope you achieve a good balance.
Lakeslover
Member

Re: Tamoxifen-Tiredness-Medical Evidence?

Hi,

Yes, because you have had cancer you are automatically covered by disability legislation, in the eyes of the law you are considered "disabled", and therefore protected. That does mean your employer has to listen to you, and make reasonable adjustments to help you do your job.

I think I am right in saying that they don't have to do so if it would be detrimental to their busines.

There may be someone more knowledgeable on here than me who can help. I have a feeling that elsewhere on this site there is a factsheet which might help you too.

BeeB
Member

Re: Tamoxifen-Tiredness-Medical Evidence?

Road Runner- thank you for the links I had forgotten those fact sheets
Sarah63- Hang on in there, it won't last for ever (apparently) I just keep trying to remind myself we are luckily to be here to be ankle to moan about it !
Lulu34- Sorry to hear you are now experiencing aches and pains. I managed to go through chem and rads with few side effects so came as a bit of a shock to feel so tired now, just goes to show how different we all are !
Lakeslover- I started after my radiotheraphy, thoughtb I'd do one thing at at time! It's reassuring to know some one Kelsey feels the need to reduce days, let me know the outcome. My department have been really supportive throughout until this request and I can't help think my line manager has based it on her personal feelings rather than occupational! The occupational reasons she has stated could relate to anyday of the week in my opinion.
Anyway thank you all for your responses.I have two weeks to try and make a case that I need three clear days rest hence the Fridays. Don't think I am going to find any documentation to support that as everything I have read states you find your own way to manage the tiredness but no examples have been documented.If anyone finds anything let me know!
One final thing for now, if all forms of cancer are covered by DDS ( have I got that correct) shouldn't my employer have ticon slider this when making a decision which is clearly on health reasons and work life balance
Thanks again
Lakeslover
Member

Re: Tamoxifen-Tiredness-Medical Evidence?

Hi,

i started tam in jan 2012 at the same time as I had radiotherapy, and have suffered from extreme tiredness and fatigue since. I found in September I was anaemic which my gp said was due to rads, so have put the tiredness down to that. But it could be either. After being back at work and struggling with full time since May I have also just asked to go to 4 days a week with Friday off. My immediate boss is supporting me, but I am waiting for the MD and HR view.

Lulu34
Member

Re: Tamoxifen-Tiredness-Medical Evidence?

i was on tamoxifen for 5 years and that wasnt a side effect i experienced.... in fact i had very little side effects.

iv recently started on letrozole and find im more tired now and more achy.
sarah63
Member

Re: Tamoxifen-Tiredness-Medical Evidence?

i find tamoxifen side effects worse than chemo!aches,pains..and worst of all the awful tiredness! i only work partime and even that is too much,iv been on tamox 2yrs and if anything i would say i have been worse the last6months.sometimes i feel like giving it up but im not that brave after having grade3 invasive. xsarahx

RoadRunner
Member

Re: Tamoxifen-Tiredness-Medical Evidence?

Cancer Research website says 1 in 4 are affected by fatigue:
http://www.cancerresearchuk.org/cancer-help/about-cancer/treatment/cancer-drugs/tamoxifen
It's also on the list of less common side effects per Macmillan:
http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Hormonaltherapies/Indiv...

BeeB
Member

Tamoxifen-Tiredness-Medical Evidence?

Hello Everyone
This is my first time here and I'm hoping one of you lovely ladies may be able to help ! I was diagnosed in 2011 had chemo, surg and rad.and now Im taking tamoxifen During the chemo I managed to continue to work full time (most of the time - the last month was a struggle) and then had six months off after my surgery.i returned to work mid 2012 and have been lucky enough yo have been able to take most Fridays off since then to use up my leave but mainly to overcome the fatigue / exhaustion Im experiencing. I find the 3 day break a good way to build up the strength for the following week. I've noe requested to reduce my hours and take off Fridays, the reduced hours have been accepted providing I take a Wed and not a Fri.
The question i need is does anyone else feel this fatigue/exhaustion using tamoxifen ? and secondly does anyone know of any documentation I can offer in support of my request because presently Im finding it difficult to expalin to my employers that I'm not doing this out of choice and a random day off isnt going to overcome the problem. I work for a very very large organisation and feel I need some medical evidence to support me request before they will rethink the decsion.
Sorry this is so long winded but I'm so frustrated trying to expalin how I feel to people who simply have no ideawhen until now I have been so positive and upbeat aboutt hewhole episode !!
Thank you to anyone who responds
B
PS on a positive note have a date in April for corrective surgery, fat transfer etc........