When denial is an obstacle

Dear Sunset19, I feel for you, I don't know how long you have been on this journey as a carer, I have been on it about 2 years now and it has at times been a very lonely journey to be on ( despite having my husband to care for, work and young children).  Life changes so much for the person with the cancer and the people who love them. It is I have found to be a continuous whirlwind of emotions which varies in intensity at times. Ultimately you will suffer as your loved one has had a cancer diagnosis and the impact of that is huge for him, you and all those who love him. In regards to your spirit breaking please look after yourself, find the time to do something for yourself ( no matter how small) it is crucial for your wellbeing and do not feel bad in anyway for it, it will benefit you and may in ways benefit your husband. Take care.

Dear sunflowers15 thank you for taking the time to reply, our journey has been almost 5 years during which we had two years (all clear) before the dreaded news that there was metastasis and so it all started again. Emotions are like you say a whirlwind and for you that must be very difficult having to care for your children at the same time as your husband. Fortunately our children are grown ups with families of their own so they are detached from our situation. I am going to look into joining a walking group now that the weather is picking up in the hope that fresh air and exercise gives me the strength to continue my carer role. Best wishes to you & your family 

Hi @sunset19, while we are never "happy" to see anyone come here it it often a really good place to be - just about everyone here will recognize your situation - my wife and I have been on this cancer path for 6 years now and her cancer was incurable from the start.

We do have quite a lot of advice for people looking after someone with cancer because it can be really hard, some describe a process they call pre-grief where the family suffer the loss of what might have been. I was lucky to to a course with Maggies on living with less stress, perhaps the biggest thing was recognising what we have now, living in the present rather that thinking what might happen and what will I do when... The conscious breathing techniques were great for self calming but also for dealing with issues that come out of the blue - the world sometimes seems to have a hasty habit of presenting new challenges too.

As far as the medics are concerned of course your hubby is in charge, have seen a number of cases on here where it seems the patient pushes their loved ones away as they don;t want to bring you down or want to protect their loved ones from the reality - talking is always good but sometimes writing things down can become less emotionally charged.

Hope reaching out here helps you some, to close just a big virtual hug.

<<hugs>>

Steve

Dear Sunset19

I can totally empathise with how you feel, my fiance was diagnosed in January with advanced prostate cancer with secondaries just about everywhere. It has been the most devasting shock and the hardest part has been the virtual total loss of our relationship. As my partner struggles to cope with a terminal diagnosis and the effects the treatments are having on him he pushes me further and further away whilst filling his time with shopping trips,  mad spending and running here there and everywhere with his friends. Nothing i say or do to try and help has any effect - in fact i just feel like a constant irritant. All you can do right now is show you are there and hope that in time he will turn to you for support. For yourself continue staying in touch with your own support network so you can vent or have a good cry dont isolate yourself. Thinking of you much love xxx

Hi src60 Steve,

thank you so much for taking the time to reply, it’s so sad that so many of us are here struggling to come to terms with things. I am so grateful to know that I’m no longer alone and that kind people like yourself are willing to support others while living through the same difficulties. Thank you for the virtual hug and I return a one for you. I will look into one of the courses you mentioned but I don’t think we have anything like that here. I have written a poem that describes how I feel but hubby dismissed it so I have put it to one side until he finally accepts things and then maybe he will understand it better.

take care & a hundred thank you’s

Dear Sneeze47

im sorry to read about your fiancé diagnosis and thank you for sharing how this affects you. As if the shock news isn’t enough this awful being pushed away is so painful for us. Every word you say is sounding familiar here and if we can take anything from this it’s not personal as it would appear that this is a common thing sadly. I wish my husband would just give me cuddles and create some lovely memories instead of creating isolation and hostility. Like you everything I do is dismissed and I feel as though he resents me. I’ve supported my husband for so long and got nothing back, it makes you feel worthless and for how long it will go on. I’m so pleased I took the step to reach out on this network and will take all advice given. Please stay in touch and if you ever need to rant I will be hear to listen. Sending love & hugs xx

i'm in a similar situation in that i'm caring for somebody who decided to shut me out. i am her medical & financial power of attorney & have a general durable power of attorney. yet she stopped sharing info with me so i have to "snoop" and "go behind her back" to get enough info to be of use to her & to share that info with her medical providers.

my person is my BFF, not a spouse. we have 2 small houses on the same property, so we are "living together" without actually living together. she has no family & is very introverted so i'm her ONLY social contact. her ONLY support person. she is fiercely independent so she misleads the doctors when they ask how she's coping. when i was at appts with her, i could weigh in. at one point that seemed like it wasn't ideal. (it was upsetting to her, partly because she *thinks* she's coping better than she is from my perspective.) so i'm now stuck with communicating with doctors separately from her appts.

she then decided to interact with me very, VERY little. several of her friends (not terribly close friends, but people who ask her how she's doing) have been kind enough to keep me informed of things they notice that they want to be sure i'm aware of. the only way i can truly check in on her is to "sneak" into her place to see whether it's hazardous for her to be living alone. to say that i hate doing this is an understatement. but i feel that she has left me no other options.

here's an example... at one point she was having a side-effect that caused her legs to feel numb. she couldn't feel anything below her knees. which made driving a big challenge. her solution? so typical of someone with "chemo brain": she decided to buy a new car. of course, any rational person would realize that's not going to solve her problem with driving. but that's the logical solution her brain came up with. (i stopped riding along when she was driving & i reported her as an "unsafe driver" to the licensing authorities. their procedure is to do nothing until her license needs to be renewed & at that point they'll require her to do a driving test. well, that's probably pointless given the prognosis. i'm told that if doctors are the ones to report her to authorities, the licensing folks will take a close look & might take her license away.) i really struggled with my decision to report this info. i spent lots of time talking it over with friends & oncology therapists/social workers. on one hand, i want to simply support her through this: help her do what *she* wants/needs to do. it's her life; it's her death; let her do it her way. on the other hand, she's putting herself & others at risk. so what on earth am i supposed to do?! ugh. it stinks.

i've found that i wrestle with the feeling of going behind her back each and every time a situation pops up. it isn't that i found one magical solution that works from that point on. rather, i figure out how to navigate the situation multiple times every day. it takes a huge effort. HUGE. but i keep trudging along, trying to do my best on her behalf.