Checking in and needing some connection-Struggling and lonely.

JSN

H everyone
Been a few months since checking in.  Last time I was experiencing a lot of sadness.  I having been seeing a psychologist weekly to work through all the issues that arise post treatment etc, as I titled my last post shifting priorities.  So much has changed and continues to change.

We moved house because I just couldn't be in the house we were living.  I didn't recognise who I was there.  Still hard to look at myself-Understanding who I am from what I was.  Instant menopause, short grey hair with a completely different feel and texture, changing relationships and recently some anger issues. 

I have been working through it all slowly but what scared me was the instant rage I felt at other people who are talk about such trivial frivolous shit - getting wrinkles, hair colour, hot flushes of natural and slow menopause, whinging about kids, husbands, partners, holidays, money, getting a cold, what to buy at the bottle shop, getting botox, work issues (that I see as completely solvable) and any number of day to day stuff.  People are just living their lives and, doing probably what I used to do but now but now I am just so different.  I have been back at work and I got really angry over a few things and my line manager suggested I take some time off to heal.  I have done this but what scared me, as I said earlier, was the anger and intolerance.  I don't recognise that or how to deal with it. I have never been this intolerant or angry.  I feel so seperate from other people now.  I feel so lonely.  When i am talking to others I feel like pretending. 

There are so many issues from the past that have arisen through counselling, crappy childhood issues (emotional abuse and emotional neglect etc), relationship issues, all sorts of things have come up that I am dealing with.  I have connected with survivors through dragon boating but the conversations are focused on the task at hand-paddling.  Right now I just want some deep connection and support from other survivors who understand and can offer any advice or reflection of their own experiences of post treatment experience. I want to be able to talk about it all-the fears, fear of every ache or physical niggle, the isolation, the feeling of separateness of being so apart from everyone and some reassurance that others have felt this and have come out the other side.  My oncologist described it as 'Your brain catching up with what has happened to you'.

I am having treatment for depression and anxiety.  I just want connection. 

Here is the only place I feel safe enough to share my feelings about it all.  I talk to my psychologist, husband but they haven't been through this.

My friendships have changed because I have changed and it's sad.  Really sad to admit that and I have nothing to give anymore.

xxxxooooo

strongtogether

Hey JSN,
I feel you right now.
I dont want to turn this into a whinge, but here goes....
I am the husband. My wife was diagnosed in June and the world's a different place now. 
I am oceans away from my family. I talk to them everyday but it gives me no peace. They either want to talk about breast cancer or about...not breast cancer. Either way I don't feel connected. Like I'm not on the same planet as they are. The things that I used to think were important are still important to them. What do I care about holiday plans and cars and deck extensions? Otherwise they want to talk about cancer and I dont get any peace from that either. I've always been the mediator and the peacemaker in the family, and now I think their issues are meaningless. And their interests are boring and indulgent. So I end up feeling isolated because no one rings me.
My son asks me if I want to play Mario kart and I say "no."
All of this and it's not even me who is sick. I feel like a fraud. And I feel guilty. I wish it were me. I wish I could take it from her. I wish there was something I could do. 
I'm not even a survivor and I'm replying to your message.
But I have hope. I have every reason to believe that this too shall pass. And I have the same blue Brisbane sky outside my window that you have. I can only offer you hope, and the assurance that you are not alone.
 And if nothing else I can ask you to forgive yourself.
None of this is your fault.

Afraser

There are others who can relate better to your circumstances but may I suggest that cancer does tends to bring out things that may have been adequately ‘managed’ before - there but under some sort of control. Fear, guilt (often unnecessary and almost certainly not effective) and depression are not unusual with a life threatening illness and unpleasant treatment. Cancer is never fair but it does seem doubly hard when you have to deal with old wounds and sadnesses as well as the more recent ones. Your oncologist is right (although your brain may be catching up with more than cancer) and seeing a psychologist is a helpful and productive thing to do. But it all takes time. Try to find one thing a day that brings or gives you pleasure - no matter how small. Sadness is insidious, it becomes normal. Small reminders that life can be pleasant, even enjoyable again, can help balance your feelings. Best wishes. 

Zoffiel

Hi @JSN

I was first diagnosed in 2006 (at 43) and the shitting thing came back in 2016
I, too, have no fond memories of my childhood. When I was convinced I was going to die without ever having what I thought everyone else had enjoyed, that made me angry. Angrier. I have been the angriest woman I know for most of my life. Two bouts of cancer made me absolutely fucking furious.

I've managed to manipulate anger into grumpiness, which lessens the likelihood of me being locked up for assaulting someone who is walking too slowly in front of me or standing beside me sniffing. Or not doing their job properly. Or parking too close to me. Bumping into me at aqua aerobics. The list of things that could drive me to violence is pretty much endless. I joke about it, but it is neither funny nor fun. I spend too much time with a fake smile that is a poorly disguised snarl on my face and far too much time screaming and crying in the car

'Stress isn't good for you.' No shit, Sherlock. That I'm making myself sick because I'm angry, makes me angrier. That I can't bloody stop, even with the best professional help that my limited funds can afford, grinds my gears to the point I am almost immobile.

My body has betrayed me. I've had to resign myself to eking out a humble living working at a level I rose above 20 years ago. Because it's all I can manage. My brain has betrayed me. I've gotten old and fat and sexless far faster and earlier than I could ever have imagined possible. 

OK, that's my rant over. You are not alone. As for what I do to let off the endless steam I generate, I have what I call red-neck rehab. I split wood and dig holes and drag stuff around the back yard. I try not to compare the slow and painful progress with what I used to be able to do. I swim as far as I can underwater without passing out and resist the urge to find out if I can breath water. I try really hard not to pick fights with strangers or bite my workmates--the deal is I can spend 30 minutes screaming at them while I'm driving home from work.

This stuff is really hard for some of us. Mxx

kmakm

Dear @JSN. Thank you for your post. You have articulated so well how many of us feel.

I have more or less stopped posting about my mental state here, for fear of being repetitive. Also I know that I have received criticism here in the past for 'complaining'. It is beyond my power to 'hurry up and get better', and as for 'getting on with it', I am at my utmost limits getting out of bed in the morning to get the kids off to school with a 100% fake smile on my face.

I have been diagnosed with major depression. I have thoughts of self harm. I see a psychologist, I exercise, I take medication (increased last week), I force myself to socialise, I started a support group, I'm applying for volunteer positions. Everything you're supposed to do, but so far, nothing is working.

I live in constant pain, have constant hot flushes, and listen to my friends say they're through menopause and feel wonderful. I spend time with my friends and often enjoy their company, but they've stopped asking me about me and my life. They're all moving on, travelling, enjoying their careers, making plans. I have some extenuating circumstances beyond my own cancer, and I am stuck.

I am working on accepting that my life is not what I thought it would be. I have lowered my sights on any future aspirations. I try to distract myself from my hopelessness and sadness with small acts of 'being kind to myself', like baking a cake, potting a plant, or going to a cafe for a cuppa. Sometimes this works, distancing the sadness for a short while. However it never goes away.

That I feel little hope for the future distances me from everyone around me. I fake it for my kids and my husband but it's beyond exhausting.

I don't have the anger (other than occasionally), but I do have the separateness and isolation. I hear you @JSN, I see you, but I have no solution to offer. Just know you are not alone. K xox

Sister

@JSN I feel a real disconnect with those around me no matter how much I try to join in.  It started with the mammo call-back and has never improved.  Positivity is a struggle as is just getting on with life through the fatigue and the body refusing to behave like it's supposed to.  And angry...there's days I could be locked up.  Other days when the anxiety is so great I can hardly catch a breath.  I'm not sure what the future is going to look like but at the moment there's not much that seems promising.  But I will keep trying and smiling when I can.  

Artferret

@JSN
I wouldn't say that you have nothing to give anymore...because your post has given us all some food for thought.
It's been 2 years since both my and my husband's cancer diagnosis (aggressive prostate). Anger was what i experienced the most followed by frustration and a feeling of helplessness for us both. As time went on the anger resolved itself, i saw a psychologist and started an exercise regime to try and gain control over my life again. What i felt the most was the loss of control and the fact that everyone treated you with kid gloves when all you really wanted was to be treated 'normal'. Thankfully our daughters took it all in their stride and kept things on a normal level. My closest friends still treat me differently.  Every time we meet it's 'how are you, Cath'...god i wish they'd stop asking because it's not what they're asking it's how they ask it that jacks me off.
Nothing is normal anymore after a cancer diagnosis, everything is a new normal which pissed me off big time. Not so much anymore though, I've come to accept it.

I'm lucky enough at this point that a lot of issues have resolved themselves. My husband still gets zero psa levels which is great.  At at the same time we are dealing with the fall out of no prostate, being erectile dysfunction...that can take up to 4 years to rectify itself, if at all. My husband is infinitely patient about it but for me it's just another thing i want to be 'normal'. I miss that full sexual experience more so because my libido is so low.
My first mammo was clear. My second one is next month and so far I'm not stressing over it too much but i know as the date gets closer i will. All those nasty little 'what ifs' creep in. Then my right breast starts twinging and funny little aches and it's like 'Stop it!' I stress over too much these days but i know that will hopefully lessen with time. Coping with drug side effects is what dominates my life. I've been back on letrozole for 6 weeks now after a 2 month break and it really bites in my ankles, knees and hands. Two days work in the garden and I'm  a mess. But i don't let it stop me...use it or lose it...i am a much more determined person now in that respect. I just have to pace myself, though sometimes it's a case of stuff it and damn the consequences!

Give yourself time, @JSN. I know that sounds like a well worn saying but it's true. And be kind to yourself. Good on you for seeing a psychologist, it helped me, and for doing dragon boating. @Afraser is right in saying to find something that gives you pleasure. I don't know where you live in Brisbane but do you have a favourite beach or walk that you like to do. For me escaping to our home in north east Victoria is always calming, walking round our half acre and staring across to Mt Bogong especially now with all the snow on it. It is our home away from home till we can retire there.
I'm glad you feel safe enough to share your feelings here. Keep doing it when you need it because we all know where you are coming from.
Hugs Cathxx

JSN

Thank you for your kinds words and support.  I always find the support here unlike any anywhere else in day to day life on my extremely bad days. 

Today is a fresh new day and I look forward.

LOTS OF LOVE TO ALL xx oo

CRM

I hope you start to feel better soon @JSN

I have had a really rough weekend with friends and boyfriend.  I'm 32 and have about 5 close friends and 2 sisters that are either pregnant or trying to fall pregnant.  Meanwhile, I am starting hormone replacement medication that will delay this opportunity for me for years and it makes me so sad.  I also had to cancel a trip to Scotland in November, which was about the only thing I had to look forward to this year.  Boyfriend keeps telling me he is also disappointed about having to cancel our holiday and it will all be fine because we will go next year.... very easy for him to say when he is about to head over to South America and California for a month (for work, but still!) while I start radiation.

iserbrown

@JSN and @CRM
It's hard yards as you settle into this unforeseen journey of Breast Cancer and it's ongoing treatment.  The forum has a wealth of experience and understanding. Popping in, reading and posting hopefully will make you feel that you are not alone 

Best wishes to you both
Take care