Hi, so Ive finished what I guess is the major cancer treatments but Im now on hormone therapy medication. Im struggling wiht cancer related fatigue.
After going on holiday to the lake district and pushing myself to far. Ive had to explain it more to my boyfriend. I went to the Maggi centre and got some leaflets about it. This helped explain it but I’m still having problems.
Going out and socialising. I’m 35 and I guess to people look healthy and fine. So my boyfriend and I went out with some friends around town. I got tired later on.
When I get tired or fatigue I kind of shut down and stop talking. Which happened and I think poeple see it as rude.
Any advice on how to explain it?
Also my boyfriend didn’t want to leave when I said I wanted to go home. He did in the end walk me to the train station but then I had to get a taxi home alone at the other end.
The next day we talked about. He says I need to be more clear and say I’m fatigue so he knows. But does it matter how I word it. If I say I want to go home, should he not just understand?
We talked about if we go to more social stuff, what do we do. I cant stay as long and he wants to stay longer. We are stuck on what to do.
Any tips? How do others manage it?
I also found it hard with all the people about in town and the noises. Like a sensory over load. Has anyone found that? My boyfriend doesnt understand it.
It just makes me sad, do we (boyfriend and I) just not go socialising out together with friends as I cant keep up?
Its also got me worried about our up coming holiday. He says we will take it easy and do one thing a day. But he has said he finds it hard slowing down, so might have to leave me in cafe while he wanders off.
How do we find the balance?
So any advice on how people balance fatigue with partners. Explain to people? Plan stuff? Would be great.
I’m not enjoying this new me, hoping she isnt forever.
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Hi there,
Yes I totally understand you. My active treatments were almost 2 years ago but still on tamoxifen.
I find that the fatigue comes and goes. I’m 41 and find that I can’t be on the on the go all the time anymore.
My wife and I try to only have one day of socialising each weekend and on the other day I can relax. This seems to help.
It is difficult to explain. Maybe you can decide on a word to use with your boyfriend, such as fatigue, when this happens.
I also find that light exercise such as a short walk or stretches helps to give energy, but when you’re tired it’s the last thing you feel like.
I hope things get easier for you x
Hi, I find the fatigue thing a bit hard, today I have woken up feeling drained so know it is going to be a ‘fatigue’ day, I usually improve by the afternoon though. I’m lucky as I’m 76 & do not have to work & my husband is really considerate, we were going out today, but probably won’t now. I don’t think anyone who hasn’t had cancer can understand this tiredness as it isn’t the same feeling as lack of sleep is it, it is a totally washed out feeling where you don’t want to do anything. I hope your boyfriend starts to understand, perhaps he should read some of the posts on this website. All the best.
Sorry that you are experiencing this - I had fatigue after radiotherapy and there were a few days when I barely got out of bed.
I’m wondering if there are any materials / info on the main website that might be helpful . If you asked the Nurses or rang the helpline they might be able to point you towards them . Also maybe listen to / watch Dr. Liz O’Riordan on YouTube Ticking off Breast Cancer / fatigue perhaps your boyfriend might find it easier to understand if he hears it explained rather than reading leaflets which can be very generalized .
It must be hard for you both as you are young and he in particular will be wanting to get back to normal while you are trying to find your normal . You are at the stage where doing the Moving Forwards course might be helpful.
As regards planning ; don’t agree to doing more than a certain amount per week and space things out if you can to give you a breather . You can feel that cancer has taken the joy and colour / spontaneity out of your life but it won’t be forever . I don’t have a lot of social media but if you do I’m wondering if you can put up a post to explain how you are feeling so that if you are going out less / become quiet when you’re out they will know why. I know it depends on where you live etc. but when I go out if I don’t know exactly how I’m getting home then I prefer to avoid alcohol ( don’t drink much anyway ) and drive - don’t know if this might be an option for you at least some of the time. That way you can decide when you’re leaving and your boyfriend can find his own way home when he’s ready .
As regards how you are feeling he’s either in denial / not grasped it or he’s a bit inconsiderate . Xx
@Katie_S Thanks for you reply. “Active treatment” was the word I was looking for. Thanks.
The doing light exercise is a good idea. I do chair yoga once a week but should probably get back to doing the arm stretchs that I got for after mastectomy.
The issue I have is I work Sundays so only have Saturdays. I’m thinking of asking work if I can have the odd Sunday off. Now that the company have hired more staff.
@balchik Thanks for your message. Yes maybe if He reads some posts. I got a leaflet that explains the spoon theory which is each activity cost a spoons and we (having fatigue) only have so many. Ive written down all things that cost spoons whme we went on on Saturday and I’m going to show him that. As I dont think he realises that even socialising and working out where the train is costs spoons/energy.
@JoanneN Thanks for post. I’m thinking I’ll ring the nurse and see what tips they have. I am waiting to go on a fatigue managing course with the Maggi the centre.
I’ll look into the YouTube video as my boyfriend is very fact logic based so maybe hearing it from a doctor will help.
Sadly I dont drive but we have discussed me getting taxis when I get fatigue.
Hi again @mirkwood42_1
If the replies we have all given have been helpful then I’m glad and I hope you get benefit from the course . There isn’t a Maggie’s centre near me but everything I’ve heard about them is really positive . In regards to Liz O’Riordan she was a breast cancer surgeon who has had breast cancer twice herself so knows the condition from all angles so to speak. I have heard the fatigue / spoon analogy but the one that stuck with me was batteries - comparing ourselves to our phones or other devices. If your phone battery starts out at 100% and you drain it down to 50% then it very quickly recharges to 100% when you plug it in but if your battery is only at say 50% to begin with due to fatigue then it very quickly drains down to zero and takes much longer to charge up again . That’s quite a factual one that might help your partner to get his head around it and I’m glad you are discussing it. Xx
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