Thank you so much for your supportive message and good advise I really appreciate it.
I am so sorry to hear that you had a tough time with your husband and it ended in divorce. I do understand what you mean that it was being made even harder, more depressing and much, much lonelier because you were living with someone who made you feel that the pain and exhaustion were in your head. You definitely didn't need that! My husbands attitude last year knocked me for six and made my fatigue worse. We all need positivity and love and care from the ones around us. Saying and making us feel that we are horrible, lazy, selfish people because of cancer is unforgivable and sadly I wont forget the way he treated me. I don't know how they can do it and it has such a negative impact on our health and wellbeing! Thankfully things here have improved greatly and I am hoping will remain so. He had a week in bed with the flu which I think reminded him of two things first I want lazy as I was up and down the stairs with food and drink for him all week and secondly what fatigue felt like.
Good advice not to apologise for being unwell... I have been doing so on several occasions. This illness makes you feel like it's your fault if your not careful especially when the family isn't understanding and caring. Thankfully my daughter is loving and caring and much more understanding of illness than my husband. As I say things are back to normal now and I am hoping will remain so but I am a little apprehensive and worried how things will be in the future if I got worse or have to have the mastectomy due to severe lymphoedema. This cancer thing isn't easy for anyone and the treatments cause so many problems but at least we are still here.
Thanks again for all the advise. I hope that you are well.
So sorry to hear that you have also been feeling so tired since your treatment. Its not easy is it. I do everything I should eat properly don't drink go for a walk and try and pace myself so I can do as much as I can but the fatigue still hits me some days worse than others. I guess it would be worse if I didn't. Hopefully it will get less at time goes on.
My husband seems to be over his episode, thankfully. It doesn't help when people don't understand
Not easy for anyone this cancer thing!
Thanks again for your message and kindness.
Yes thankfully things are much better but I must admit his attitude towards me has knocked me backwards fatigue wise, taking a little getting over. It was quite awful for a few weeks and he said he thought a divorce was on the horizon. Thankfully I have a lovely caring and supportive daughter, I don't know how I would have got through those weeks in Nov/Dec without her. It hadn't been pleasant for her hearing her father being so nasty to me calling me lazy and vile and seeing him throw things around and I was also very concerned what effect it was having on her emotionally which was an added worry, so I am very glad things are back to normal for her sake as well as mine. I am hoping things will remain OK!
My husband doesn't cope with illness very well and does lack some empathy and understanding. It isn't easy for him. He came down with the flu the week before Christmas and spent a week in bed so I was up and down the stairs all day with food and drink .... I think that reminded him that I am not lazy, as he has been much nicer since.
I have severe lymph in the breast from the radiotherapy and have to do daily massage at home and have weekly MLD however this isn't controlling the lymph and I am awaiting another complete decongestive MLD. I am on daily antibiotics for a year and there is a possibility mastectomy might be needed but cannot be done right now as radiotherapy still working so further healing issues would arise. I am hoping that it will heal and I wont need the mastectomy but the next few months will tell. It is difficult when people don't understand the fatigue issue as it causes unnecessary stress and makes things worse but as you say they are going through their own stuff too with problems at work etc and the stress gets to them as well. Not easy for anyone this cancer thing!
Thanks again for your message, understanding and kindness.
Back in 2006 I had cervical cancer. I spent all my time and energy trying to make my husband feel better. I didn't want him, or the rest of my friends and family, to worry.
You put on a brave face and exhaust yourself trying to make everyone else feel OK about your condition.....until you just can't do it any more. That's when you find out just how kind/selfish people are. Sorry if this sounds sexist but men are notoriously bad in this situation. They are happy to make you the odd cup of tea and get you another cushion in the beginning but very quickly they want you to be back to normal and can get quite annoyed if you are soooooo lazy that you fail to magically fix a deeply complex medical condition with a click of your fingers!!
The most hateful thing about chronic fatigue is that it is invisible. If your leg was in a cast he wouldn't argue. If your feet were amputated he would get his head round the idea that standing up was not as easy for you as it used to be. I have survived 12 years so far when the oncologist didn't expect me to last a year so I have been incredibly lucky. Four years ago I decided that it was difficult enough living with daily pain and fatigue (I have fibromyalgia, which is common in people post-cancer but NOT inevitable so don't panic) and it was being made even harder, more depressing and much, much lonelier because I was living with someone who made me feel that the pain and exhaustion were in my head and that I was just a horrible, lazy, selfish person.
I divorced him. Now I am going through breast cancer treatment alone and it isn't half as stressful as I don't have to apologise for being unwell!!
I'm not suggesting that divorce is your only option or even your best one. I really am saying that you must Not apologise for being unwell. Don't be afraid to tell him that he is being selfish and perhaps select a few of the many articles available about cancer-related fatigue. Book an appointment with your specialist and get him to go with you. Don't tell him the plan beforehand but once he is there get the experts to talk to him about just how damned awful it is having a condition which makes even the most joyful moments of life hard work. Perhaps he will be more reasonable if an expert says it to him rather than just you.
This is a wicked illness because the initial problem is just the start of a bunch of symptoms and related conditions, many of which are completely invisible. You are often already depressed about your body letting you down, then the condition makes you feel worse, then the treatments often have depression as a common side-effect, then it is easy to become isolated from friends and family.......also depressing. You start to believe that you are responsible for letting everyone else down in work, family, friends etc. You feel like a burden. You carry the weight of everyone's fears.
Under the pressure of all of that it becomes easier to believe it when someone who is supposed to love and care for you says that you are lazy, that you are milking your illness, that you could do more but that you aren't trying hard enough.
Please, please, please don't listen to those voices. Listen to the people on this forum - people who know a hell of a lot more about it than most because we've lived it! Listen to your doctor when they tell you that cancer fatigue is a real, well-documented condition. Listen to organisations like Macmillan - there's a really good chance that they will have a support group local to you. Get into a support group even though you really don't have the strength to leave the house in the evening - have an afternoon nap beforehand. If it is an afternoon group then go to bed super early that night. Get some actual flesh-and-blood people around who know what it's like.
You deserve support, not criticism. You have lots of voices supporting you here so make sure you listen to people who are on your side and don't let the voice of criticism get inside your head. You are fighting a full scale battle every single day. I'd say that you are pretty damned tough!!
I m sorry to hear that.
I have been feeling extremely tired since the treatment infact i never went to my former self.
You do need all the love and support you can get it is difficult to cope with this **bleep** without having to deal with more unwanted judgemental **bleep** from the ones who are supposrd to support you.
I hope he bucks his ideas up Pat - so very unfair to talk to you like that .Sounds like you are putting everthing into moving forward and doing all the right things .I think a lot of partners struggle with the whole experience and aftermath of a cancer diagnosis and it can cause huge stress on relationships - so difficult when you really need their support that they are not able to give it because they are going through their own stuff too .Lots of support here from people who understand .x
Thank you Saskia for the info and advise. If things don't improve I will give one of the nurses a call as you suggest.
Many thanks for your reply Jill. Sorry your hubby has also had episodes of not understanding. I agree family, on the whole, don't understand. The thing is I have been keeping upbeat most days, eating well and doing my best so it feels like a huge smack in the mouth.
Anyway hopefully things will improve soon!
Take care and thanks again.
Thank you for your kind and supportive reply Wonky and sorry to hear you have received similar negativity from your friend. Life isn't easy.
Take care and thank you
I am so sorry to read your post and first up, a hug from me. I can empathise as one of my oldest friends took the approach of trying to 'get me moving/back to normal/pull myself together' when I was physically and emotionally very upset and tired. And it hurt my feelings, as she was simply too harsh and impatient.
Cancer has a wide and often strange effect on people and not everyone can handle it terribly well; we the patients have to, but friends and family - our loved ones - are not necessarily seeing it in the same way. There is also a section on here called "Supporting Someone With BC".
Pat - I'm so sorry your husband is behaving like a bleep towards you - you certainly don't deserve it - cancer treatment takes it out of you physically and mentally for quite some time after treatment finishes.My OH has had times where he has been not the most understanding ( slight under exaggeration 😳) too .I think partners /family / friends expect normal service to be resumed as soon as treatment has finished and that's just not the case .Compassion fatigue often kicks in when you're really still need support ..Concentrate as much as you can on looking after yourself and getting support from those outside the situation if you can .There is also a Sex and Relationahips private group on the forum if you want to talk more privately about this .Best wishes Jill x
Thank you for posting. It sounds like you're going through a really tough time at the moment. We want you to know that we're here for you.
If you would like to speak to one of our nurses for clinical advice about these complications in your treatment you can call them on 0808 800 6000 (Monday - Friday 9am-4pm and Saturdays from 9am-1pm).
Also, if you wanted to, you could call them for emotional support or just to talk things through.
Sending you our best wishes,
I had a lumpectomy earlier in the year but the complications have had the biggest effect on my body. I had post op infection, haematoma, severe reaction to radiotherapy causing lymphoedema in b reast with reoccuring cellulitis infections and on one occasion lymphangitis . I am on antibiotics daily for one year. The infections and radiotherapy damage wiped me out and I was very poorly this summer. Thankfully I have improved greatly and doing most household tasks but there are still some days I am tired out and I often go to bed at 8.30pm to try and control my fatigue. This week my husband tells me I am lazy and vile, just what I needed. I have kept upbeat and positive throughout this very difficult year b ut his attitude towards me is a negative imapct I could do without.