Life after cancer

This group is for cancer survivors and people who have finished treatment. It is a space to discuss things like the physical and emotional after effects of cancer, returning to work, or trying to move on with your life.

Exhausted

Chardonnay
Posted by

I am now back at work teaching full time with senior responsibilities and to back. It's something for me that makes me feel valued and back to normal. But you need support I other ways to near you to do it successfully.

The thing people around you don't see or understand is the impact of treatment post cancer on your general health. I get tired easily getting up at 5.30 every morning g to irrigate before work and often working late into the evening takes it's toll. I am Sometimes forgetful. The radiotberapy induced insufficiency fractures in my pelvis give me constant pain and the neuropathy in my hands and feet make lots of things challenging.

Don't get me wrong I am so grateful to be a survivor of cancer and determined not to let it control my life but wish that others could be a little more understanding. For example after working full time this week after 5.3o am get ups, checking in on my disabled mum on my way home, preparing nearly all the meals and doing all the washing, I have today done the shoppi v with my husband (who also works long hours) and spent all afternoon cleaning as he followed me round with the vacuum whilst our 17 and 21 year old daughter's sat and watched Netflx!

I sorry to vent but I was wondering if anyone else was struggling with this and has any suggestions of how to get people on board without sounding like I'm feeling sorry for myself, moaning or nagging. I am now having to lie down on the bed to get some relief from the pain. It's so frustrating  because I feel I want to/ can do all these things yet my body  is saying Nooooo.

Crustybladder
Posted by

Hi Chardonnay

Rule 1 is to listen to your body and look after yourself. If you feel tired then you must rest up. Housework is very unimportant and we stop worrying about it.

When our 24 year old son commented that we were low on milk and beer I explained where these items can be sourced in exchange for money. When he ran out of clean shirts, he learned quickly that the laundry fairy was busy looking after Dad. We had to let the housekeeper, bedroom maid and head cook go as well as we were busy dealing with the post surgery stuff.

Those tricky conversations with those you live with have to be had but perhaps your husband could discuss your needs with them.

Or make them pay rent and see how quickly they move out!

CB.

Chardonnay
Posted by

The thing is I don't want that! 

Just a little appreciation and understanding would do. From some people at work too! 

This last year has been pretty tough for them too. The youngest had her GCSEs as I was having my chemoradiotherapy before surgery which was a very worrying time for them. The oldest was finishing her 2nd year at uni which didn't go well for her.

It's tricky but my husband sometimes thinks I make too much of things and  need to 

Let it go!

It's so hard when you have always been so organised and in control being able to juggle and manage work and home but I appreciate what you're saying. Thank you

Evergreen333
Posted by

Hi Chardonnay,

"Exhaustion", that is a very hard thing to avoid for busy persons like you and for a lot of us....After all the shock of being diagnosed with cancer, then the many hospital appointments for tests, scans etc, then Surgery and Radiotherapy and for those who have had chemotherapy and are on endocrine/hormone medications, no wonder we are all exhausted. On top of that some of us have secular work then still have to look after the household chores, children and grandchildren... No wonder we are exhausted. But as for our partners, husbands of family to really understand all that, I can't see it happening. They try but they cannot fully feel what we are talking about....

For me it will be a constant struggle to slow down or to rest as much as possible while I feel there are a lot of demands on me and I'm probably allowing it! May be the day will come when I really won't be able to do much then it will be enforced rest. But in the meantime I will keep trying to grab a moment or so to rejuvenate and renew my energy with Tai Chi, music & some deep breathing exercises.

I wish you well and hopefully you'll find a way to lighten your load so that you don't feel so overwhelmed by life's demands and expectations.

Take care, 

Evergreen333 

Fairycake
Posted by

Hi Chardonnay,

You're so right when you say that it's hard for people to understand the exhaustion that we can feel post surgery/chemo/radio etc. people think you look well and therefore expect you to function as you did before! It's great that generally you feel well enough to work full time and I agree it's important to do things we feel are important to us. There are no easy answers unfortunately. I imagine your family do appreciate you but like most don't show it! Other than having a quiet word in ears or maybe having a family meeting and establishing some new ground rules  Im not really sure how you tackle it. You could always try leaving your post on the forum open for them to read and see if it hits home! 

For what it's worth you come across as a very caring person who is doing everything she can live life  to the full, being there for her famy and doing her best by everyone at work too Sending you a big hug 

Chardonnay
Posted by

I know what you mean Evergreen.

We have been piloting a 'Mindfulness' project in our school and that is brilliant. Also had input on 'chimp management' managing our behaviour over the things we can't control.

It's still very hard and frustrating more than anything. The support you get throughout treatment and surgery from the health services is amazing but then after it's all over you feel left all on your own to cope with the co-morbidities which often make you feel in poorer health than just before diagnosis. 

The problem is you want to be positive and not let others think you're a liability and a victim but at the same time you don't have the capacity to do what you did before.


I guess until the treatments become less toxic and harsh that's the price of remission. I'm hopeful things will improve as time goes on and I hope they do for you too. 

 

Chardonnay
Posted by

Thank you for that Fairycake. They are very kind words and I really appreciate that.

May just leave my I oaf open in the kitchen! 

I don't do confrontation well so that sounds like a plan.

Chardonnay x

GBear
Posted by

I can totally understand the exhaustion, wow it's incredible I find these days I don't know how I used to work, I get so tired trying to do so much forgetting that I am not at my fittest and shouldn't be doing things. Sometimes those we need the reinforced rest to get us to fully recover. It's great if you have the support. But I should follow my own advice here but get others to do things it's ok to ask for help and others around you should be more willing to help, ok they may not understand exactly how we feel but they should learn to look for the signs, the signs that say I have to stop.

Hedwigg
Posted by

Hi Chardonnay,

thank you for being brave enough to post how you are feeling! I feel exactly the same.

I have been in remission since January and returned to work before easter - down to money! I am a teacher as well in a senior role and as next week is looming, I am beginning to panic more and more in case this exhaustion I feel consumes my entire being and I am no longer able to function as a human being, let alone do my job. Extreme thoughts, I know but awful when trying to get on and push through the fatigue then end up in pain because you have done too much and you have to get on with life. Hope it will improve soon.

You are right though, people don't understand how you feel unless they have been through it. I have posted on here twice and the kind support from others really helped and made me feel I am not alone and it is not just me. Try to keep positive, that is what someone advised me. I bought a book by Ruby Wax, a mindfulness guide for the frazzled. I love the exercises she recommends and feel it made me more aware of myself. Might be worth a try.

Gooner17
Posted by

Hi Chardonnay, 

As you can see from other people's replies, you are not the only one who feels like this. 

After chemo /radiotherapy you will find the new normal, and for many of us this is a version of ourselves that has less energy. 


After several bouts of treatment over many years I have really struggled with energy and recently felt it was having a significant and detrimental effect on my life and that of my family. 


So with help from others, here is my plan - feel to try all, some or none of it. 


Reduced work to four days a week - a day for myself when I feel good or to stay in bed when tired! 

A bit of exercise with macmillan every day active. 

Recognising the emotional tiredness - for me this has mean some counselling and anti depressants 

A proper holiday 


Finally with regard to family, telling them how I felt but also that I had a plan got a good response. You are asking them to help you in your plan rather than take up the slack. 


Pain is exhausting, can you speak to GP or nurse about this, although be aware that some pain relief also makes you tired


If that fails cancel Netflix!!! 


17 years ago my first cancer nurse told me be nice to myself - it is still good advice. 


I hope you find a way forward 


P


HeatherT
Posted by

I totally understand the struggle of not wanting to have anyone feel sorry for me but at the same time have them step up.

I try to do as much as I can because I don't want to feel that I am not the same person I was. But with the pain I still have in my finger nails and toe nails there are things that are just down right uncomfortable to do. My husband works long hours and I work at home. I have always done the bulk of the cleaning, cooking and laundry which hubby has been used to. I have found ways to compensate how I use my hands to make it less painful. But why he can't step up more than he has knowing the problems I have, with my hands especially, is beyond me. I get tired of asking for help around the house, I shouldn't have to. It's plain as day - the sink is full of dirty dishes, laundry is piling up. That should be enough proof that I need help with these things, I shouldn't have to ask for simple help.

The other day I asked him to squeeze toothpaste on my toothbrush because it hurt and he did it gladly. But never asked me again after that if I needed him to do that. It would be wonderful if he asked me if there was anything he could do to help or if I needed anything now that treatment is over. He thinks that since he commutes over an hour each day and works full time and makes the bulk of the money that his job is done. He has however been doing his own laundry which is great but he leaves his clothes in the dryer too long and then I wind up having to take his crap out so I can do mine. And doing laundry is hell on my hands.

Don't get me wrong, he is a wonderful man but cleaning has never been one of his strong suits and he can be a lazy slob. He was wonderful while I was going through treatment. But I am getting increasingly resentful towards him and it hurts my feelings.

Feels good to vent.

Zappaman
Posted by

Sometimes we all feel we should not need to ask for help, it should be forthcoming. Everyone should know when to offer help and when to back off. Unfortunately life is never that straight forward and easy, we don't think we should have to ask for help, and our loved ones think if we needed help we would ask, so they had better not offend us by offering to help. It's a no win situation ! Sometimes we need ( as men) to be told that help is appreciated, we all need to communicate with each other better. This comes from a stubborn bugger who finds it difficult to ask for help! Kind regards Frank

Piratemom1
Posted by

The problem is you want to be positive and not let others think you're a liability and a victim but at the same time you don't have the capacity to do what you did before.

I stole this from Fairycake's post...... It sums it up so perfectly. If we are able to return to work, we strive to put on a positive attitude that we are back to normal and don't want pity, but some how it comes across to our co-workers as "Hey, everything is just fine, I am just like before"...........but it really isn't. We want it to be, but our mind and body just aren't able to be 100%. People at work would tell me "oh you are so strong, you look great". But they have no idea that I went home and slept 10 - 11 hours just to get the strength to come back to work the next day.  I smile and nod because I don't want to appear less of a capable co-worker.

When we do make a mistake at work, because we just can't remember something that should be so simple, they don't even consider that we might still be dealing with side effects of chemo, etc, because we smile and "look so good".

I have not figured out a way to explain it to co-workers or management either. So I just smile and struggle on........

Thank you so much for this post. I would say that MANY of us are dealing with this issue.  

moomy
Posted by

Hi Chardonnay and all who feel this problem; 

I agree, you need to meet up as a family and make a plan, sharing the work just a teeny bit more will help the rest of the gang realise quite how much you do and try to do, and get the others to just take on a bit more; if the work is shared out, the extra small responsibility will help others to step up, realise quite how much you do and appreciate you for it. 

It sounds like you have a long commute, too and I realise senior teachers have responsibilities over and above their teaching role. As the senior, is it possible to re-allocate any duties to staff who have less to do, just maybe to give yourself a rest period even just once a week? 

I hope you're trying to rest properly when it's time to sleep and not be worrying about the work you have piled up the next day? Switching off is SO important! Mindfulness exercises and/or formal relaxation with gentle music can help here.

Proper outside exercise does help post chemo exhaustion too, a walk outside is ideal; but again, it's something more to fit into a busy life! Did you maybe go back to full time work a month or two too soon? Might it help to talk to your Head and try to re-arrange things so you have less to do? (Although this might not be possible now I realise) 

Sending you and others healing, stengthening hugs xxx

Wedgegirl
Posted by

As a family we sat down as discussed that one of the side effects of cancer was going to be the impact it had on us as a family, I've always taken care of the home, garden and cooking, we agreed at least for this year the garden would be come my husbands responsibility. The girls would be responsible for cleaning the kitchen down every evening and loading/unloading the dishwasher, they do this on a weekly rota and that works well for them. Food shopping I make a list and my husband pops and does that. Cooking, mainly still my job, but we all agree that when I can't then first it's husbands job then takeaway! One daughter is responsible for dusting the other hoovering, I ensure the washing machine is run.

So far because we all have set jobs and all know what's expected it's working well for us, I should add that they all have full time jobs as well.

It has been a real shift for me accepting a I'm not well and be I can't do it all, I love looking after my family and have done so with a huge amount of pride for the last 24 years, but at this time my body needs me to listen to it, so that's what I'm doing.