I am currently dealing with after effects of radiation. I have severe fatigue, nausea and depression. The levels of frustration at not being able to function at a higher level are compounded by my lack of support.
The back story…I have been a full time caregiver to a partner with advanced cancer ( mucosal melanoma). I’ll admit I’m burnt out. I made mistakes by taking on too much, by asking for help, by showing my fear. Friends and family abandoned us.
Then I got diagnosed with dcis and lcis. I wasn’t worried because I believed it was early stages and would be cleared up easily. Everything was good until radiation. I was given the option of 5 days of radiation or genetic testing. If that testing came back positive then I’d have to have radiation. I made the biggest mistake ever by opting for no genetic testing. I might not be here looking for support.
As I said I’m really suffering with fatigue that I wasn’t prepared for. I had no idea it was even possible to feel this bad.
Oncologist said it was normal and I wouldn’t start to feel better until Christmas ( 6 months after finishing radiation). While there was some comfort in that the new issue became getting support from the only people that hadn’t vanished…my in-laws!
They have never been supportive but they hung around on the periphery. As long as my partner and I said we were “fine” then they’d include us.
The problems began after I was diagnosed and not coping because I went into this deeply burnt out so I asked for help. I said I couldn’t do it all. I needed help to care for partner. I needed people who wouldn’t judge my fatigue and I needed people to take a real interest in me.
Since they couldn’t/ wouldn’t I’ve stopped playing their game. No more contact. It’s the phoniness and pretense I cannot do anymore.
I’m not ok. My partner is not ok. We have no support but am I wrong to back away from my in-laws toxic presence. This weekend is a big birthday party. I can’t go because it would require a 12 hr day. By 2pm I’m usually nauseous and exhausted
But not one of them has reached out to me. I don’t know if they think I’m faking it or have simply decided I’m not worth the effort.
Question …should I be handling this differently? I sent the birthday girl wishes but still got nothing about me. It feels like I don’t matter. My partner is happy playing their games and thinks it’s easier if I’m not there causing tension.
Am I at fault? How do I cope moving forward? Is it better to stay in toxic relationships so I’m not so isolated or to set a boundary that states I have needs too?
Hi @summary57
I feel for you. I often think, if they can’t be bothered neither can I. Sometimes people ask how you are, but not prepared for an answer other than “I’m fine thanks”. I now say “plodding on” or “still ticking” or “getting by” which neither says I’m fit and well, but doesn’t indulge my problems.
People expect you to be OK once the surgery, chemo or radiotherapy has finished, and if you tell them otherwise, you somehow feel like a hypochondriac. Truth is, people dont know what it’s like until they are in the same place, and even then there is no “one size fits all” as we are all different.
The word Cancer also scares everyone and perhaps they don’t know how best to speak to you without causing upset or offence - but by doing so, it then appears they are not interested and uncaring.
Question is, how do you make things better….I’m no expert, but I’ve always been told to try talking first. If you feel comfortable, perhaps have one more go at talking to them. Explain you are not trying be rude or awkward or attention seeking, but the treatments you are on have long term effects. Restate that you are finding things difficult and ask again if they can help (it’s their son/daughter if I read that correctly). If you don’t get help, your partner will also suffer, making a bad situation even worse.
If all fails, sometimes it best to distance yourself and use other sources for help and support. You don’t need extra stress. Try the helpline on BCN or MacMillan they have lots of advice and ideas for difficult situations. This forum is good, if you just need to chat. Even speak to social services and see what they can provide. Your GP may have some suggestions, or medications to help. If you are working, consider changing your schedule…your employers are legally obliged under Equality Act to take your diagnosis into consideration.
Lastly from me, put off anything that can wait, and use that pocket of time to rest or have a nap. Even a short break can make a difference. Make sure you are eating well and drinking fluids. Try to fit in a bit of time outside, fresh air and a stroll can work wonders.
Hope you find a solution and way forward x
Thank you for your kind response. I’m feeling better today but everyday is different isn’t it?
Glad you’re feeling better today. It is a rollercoaster and emotions can change by the minute. Fatigue is so hard, I still struggle often in the afternoon (I’m 10 months post radiotherapy).
Take care, and reach out if you need support,
When I was diagnosed with breast cancer I was trying to support my very elderly Dad - his health was failing badly at the time and we were both grieving for my Mum who had died a few months previously . He lived some distance from me , and after radiotherapy I also was hit with fatigue - barely got out of bed for 4 days. I managed to stay away for 2 weeks my brother lives even further away was passing and visited as did out lovely neighbour but after that I was to and fro again and also dealing with a shoulder injury and I think it probably prolonged my fatigue . I’m not sure now what I would have done differently my Dad went into care for his last few months - I have mixed feelings about that but I realised that I couldn’t continue as things had been and Dad didn’t want other people in the house so extra care ( he was already having some services ) was not an option.
I’m wondering if MacMillan can offer any financial support / advice / perhaps care to you and your husband to take some of the burden off you and give you time to recover . You could ask for a social services assessment , I’m wondering if you are claiming attendance allowance also - lots of paperwork but it’s not means tested and might allow you to pay for some extra help . Also speak to your GP . Please forgive me if you’ve tried all this.
Although the radiotherapy was to blame for my fatigue I like you I was already worn down when it struck - I have wondered if this was why I got it as not everyone does. It lasted 3 months but some days were better than others - I found that recovery was not a nice linear progression , I could have a couple of good days then a day when I would get part way through doing something and just have to stop.
If your relationships with family are sapping your energy at the time when you have so little then honestly I would say just try to forget them for the time being . Put the ball back in their court . It doesn’t sound as though either you or your partner ( their own son ! ) can really rely on them . Family relationships can be so difficult to navigate and maybe your partner likes to pretend to others that things are not as bad as they are or perhaps they just can’t deal with cancer - it’s a common complaint on this forum that when cancer strikes friends and relatives can behave very oddly or do vanishing acts .
Try not to be angry or blame yourself for choosing the radiotherapy . I made a wrong treatment choice as well - I was angry at the medics for pushing it at me but I was blaming myself more . It’s such a waste of energy when you have so little and none of us have a crystal ball so you make the decision you think is the right one at the time . When you’ve recovered your feelings about having had the radiotherapy may change .
Try to drink plenty of fluids as radiotherapy can dehydrate you . I also suffered with nausea and found that food and drink with ginger helped. I used to lie down a d listen to Headspace if I wasn’t up to doing anything else and @sal1 is correct that if something can wait then you have to let it .
Sending love and best wishes for your recovery . Xx
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**[quote=“JoanneN, post:5, topic:136735, full:true”]
When I was diagnosed with breast cancer I was trying to support my very elderly Dad - his health was failing badly at the time and we were both grieving for my Mum who had died a few months previously . He lived some distance from me , and after radiotherapy I also was hit with fatigue - barely got out of bed for 4 days. I managed to stay away for 2 weeks my brother lives even further away was passing and visited as did out lovely neighbour but after that I was to and fro again and also dealing with a shoulder injury and I think it probably prolonged my fatigue . I’m not sure now what I would have done differently my Dad went into care for his last few months - I have mixed feelings about that but I realised that I couldn’t continue as things had been and Dad didn’t want other people in the house so extra care ( he was already having some services ) was not an option.
I’m wondering if MacMillan can offer any financial support / advice / perhaps care to you and your husband to take some of the burden off you and give you time to recover . You could ask for a social services assessment , I’m wondering if you are claiming attendance allowance also - lots of paperwork but it’s not means tested and might allow you to pay for some extra help . Also speak to your GP . Please forgive me if you’ve tried all this.
Although the radiotherapy was to blame for my fatigue I like you I was already worn down when it struck - I have wondered if this was why I got it as not everyone does. It lasted 3 months but some days were better than others - I found that recovery was not a nice linear progression , I could have a couple of good days then a day when I would get part way through doing something and just have to stop.
If your relationships with family are sapping your energy at the time when you have so little then honestly I would say just try to forget them for the time being . Put the ball back in their court . It doesn’t sound as though either you or your partner ( their own son ! ) can really rely on them . Family relationships can be so difficult to navigate and maybe your partner likes to pretend to others that things are not as bad as they are or perhaps they just can’t deal with cancer - it’s a common complaint on this forum that when cancer strikes friends and relatives can behave very oddly or do vanishing acts .
Try not to be angry or blame yourself for choosing the radiotherapy . I made a wrong treatment choice as well - I was angry at the medics for pushing it at me but I was blaming myself more . It’s such a waste of energy when you have so little and none of us have a crystal ball so you make the decision you think is the right one at the time . When you’ve recovered your feelings about having had the radiotherapy may change .
Try to drink plenty of fluids as radiotherapy can dehydrate you . I also suffered with nausea and found that food and drink with ginger helped. I used to lie down a d listen to Headspace if I wasn’t up to doing anything else and @sal1 is correct that if something can wait then you have to let it .
Sending love and best wishes for your recovery . Xx
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Jo
Jo,
Thanks so much for validating what I’m going thru.
Your suggestions were helpful because I think when we get overwhelmed with fatigue it’s very hard to think about what to do next. It might be staring us in the face but we’re so busy surviving it’s hard to process the next thing. Another phone call can feel like moving a mountain!
Thanks for writing back. I really needed to hear your words today.
Sue
It turned out to be a much longer post than I intended - well done for reading the whole of it ! I hope you start to feel better in yourself soon. Xx