1 year on, a survivors struggle continues...

[ummm what?!]

Hi everyone,

I think the last time I posted on this forum was shortly after finishing radio therapy. As my 1 year anniversary approaches I've been compelled to share my story so far, perhaps it will help me to overcome the challenges still holding me down, perhaps it will help someone else realise they're not alone. Either way here I go.

On August 25th, 2005, I was diagnosed with seminoma in my left testicle. I will not likely forget the moment my doctor said that he had to "remove the testus". Needless to say I nearly fainted, both the doc and my Mum were there ready but somehow I managed to stay upright. I had never had an operation before, in fact to go further I could say I had always feared ever needing to have an operation and had always had a general fear of cancer and hospitals as I lost my Grandmother to bowel cancer in 1989. Worst still was when my doc sat me down (a wise move) and then said I needed to have it removed ASAP, before asking me when I want it removed. This man wasn't just asking me when I would like to have life saving surgery, he was asking me when I would like him to remove my testicle... again I nearly fainted. Enough courage was given to me to say "how soon" could he get me in, the answer being 5 o'clock that same afternoon! (did I mention I nearly fainted?)

I won't dwell any further on that day here out of respect for everyone reading this, except to say that I've been through so much pain yet so much joy as I rediscover life over this last year. Unfortunately this post will concentrate on the pain as I am having trouble dealing with that at present. In this past year I have panic attacks, at first on a daily basis but it took ages to even get to weekly let alone monthly. The stress, fear and anxiety would build up over time before it all came out because of one mention of cancer, hospitals, surgery or even just a gruesome image or topic on tv. I just couldn't handle being confronted with anything that reminded me of the trauma that my body and mind have been through.

I have also been through numerous random aches and pains and this is where the rollercoaster begins. I could be completely happy and feeling like I'm finally getting past it all, then a pain would start up somewhere on my body. At first it would worry me only a little as it would be completely unexplainable. But after about two weeks I would be a complete and utter mess, until said panic attack takes place and the next day I would wake up to a new day, pains gone. This went on for about 6 months in total and now appears to be over... I hope.

There are still two issues that remain in my life. One is dizzying headaches usually leading up to, but apparently not causing, a panic attack. And the other is a developing phobia for anything medical or surgical. This last one seems to trigger the headaches most times and could best be described by tonights experience... I just watched a short film called "Color Blind" in which I man is admitted to a hospital. To put it plainly, I was beginning to freak out just from watching the opening scenes of him simply being tended to by a nurse. When the movie went onto more in-depth topics I had to pause it and step away as my skull began to throb and the whoozyness began to take hold. Stepping away from the tv it took only a couple of minutes before I was fine again. This occured 3 times before I got to the end of the film, which incidentally was only 30 minutes long.

I don't know if I have shared too much here but I really am hoping that someone will recognise something familiar in this post and either be able to take something away from it for their own benefit or potentially be able to contribute to what's been said.

[Karen]

Hi ummm,
First, congratulations on your one year survivorship. I do hope that your medical fears have not kept you from follow ups? I can relate to what you are saying about the anxiety and panic. Since so many here have shared very personal things about their lives I will do the same. There is a history of depression/anxiety on one side of family, seems to hit all the women to varying degrees, some quite severely. I had occassional panic attacks starting in college and was able to ride them out. After I hit 30 the anxiety and panic came more frequently and lasted much longer. When it passed I felt perfectly fine, so I ignored it. Fear of cancer and illness was always the trigger and I also focused on aches and pains I was certain was the start of a fatal disease (and never was, of course). I could not tolerate feeling that way any longer so I went to my GP, sobbing hysterically, and he referred me to a psychiatrist. That was a year ago. I now am on a very low dose antidepressant and have never felt so emotionally strong. I am fully functional and happy. The anxiety I definatley am gripped with pre-follow up for my husband's TC is within the normal level to be expected. You really can overcome this. There is no shame in seeking help for mental health. My issue was that I felt this was something I should be able to overcome myself. I couldn't and am glad I finally realized that. Life is too precious and you've come too far not to be REALLY happy! Please seek help for this.

[ummm what?!]

Hi Karen,

Thanks for posting, you've raised so many good points that I'm going to knock them off one at a time...

First, congratulations on your one year survivorship.

thanks heaps! it still feels like yesterday, kinda like this last year hasn't really happened. The only thing that makes it feel real is that while laying in my hospital bed I had a sudden realization that there were so many things I wanter to achieve and yet I had been holding off for no good reason. I found a job with a much better company, moved out of home (this time for good ). In short things have never been better, hence the severe contradiction in the way I feel during attacks.

I do hope that your medical fears have not kept you from follow ups?

No definitely not haha, I just have a freak out or three in the waiting room before each checkup

The anxiety I definatley am gripped with pre-follow up for my husband's TC is within the normal level to be expected.

As above, I totally appreciate this situation. The anxiety builds slowly in the final week before each appointment.

I felt this was something I should be able to overcome myself. I couldn't and am glad I finally realized that.

This really is a bit of a wake-up call for me in all honesty. To explain I need to open up a little more, when I was 18 I was diagnosed with a learning disorder and placed on a very mind medication. At first I was against it, the foolish pride in me said "I can do it on my own". Unfortunately I had 18 years behind me that said otherwise so I gave in. Believe me I'm glad I did so but I couldn't wait for the day when I could stop taking them. But back to the point, I think I need to again put my foolish pride aside and see the doc...

Life is too precious and you've come too far not to be REALLY happy! Please seek help for this.

Yes, this I can not agree more with. I'm really looking forward to getting over the downers but certainly I stopped worrying about minor things and started living life through everyday stresses.

Again, thanks for posting, it's still a long road ahead but I think with a little help it won't be nearly as difficult.

[Sans rt1]

Ummm -

Congratulations on your 1 year! Sounds like there have been some ups and downs for you, but things are definitely looking bright for you going forward.

I know that each of us will deal with things in our own way, that many folks have had a much rougher time of it than I have, but I think all of us have felt the emotional effects of TC. I am at 4 months, myself. Although I have never been prone to depression or anxiety, I can honestly say I have had my share of ups and downs over the past few months. No way that this won't have an impact on you emotionally and it certainly affects your close relationships as well.

Just last night, I found myself in an knock-down argument with my wife, who was amazingly supportive through all of this, but had recently become very negative and in many ways (this is my opinion) kind of nasty with me. Anyway, we let it all out, and it led to discussion, some tears and a better understanding of how this has affected each of us. It seems my wife was frustrated as so much had been put on hold and she was ready to get things going again (when diagnosed, we had begun some home rennovation work, which sometime needs to be started up again). However, I am not quite ready for that - I found myself saying that I had been through a lot, and now that I feel good again I just want to enjoy life for a while - with as little stress as possible. I could not believe when I heard myself tell her how angry and resentful I was because I just wanted to be happy and she was ruining it for me (so, maybe I have been nasty to her without realizing it too?).

Anyway, it was good that we finally 'aired the laundry'. I think she needed understand that I am still working through all of this - I had been through a rough time and yes, I deserve to indulge myself for a while. But then again, I need to remember to think of my wife and her feelings - this has been no picnic for her either and she deserves to start living again too. So, what will we do? I don't know. I guess we will probably start up with the rennovations again soon, but maybe a little slower and maybe we won't try to do as much ourselves as we had originally planned.

I think it is normal to have some ups and downs - all of us have experienced it to some extent. TC takes a toll not just on your body, but your emotions and your relationships as well. No one knows what the future holds, so it is not worth dwelling on the uncertainty. Yes, as TC survivors we need to be vigilant, stay on top of our follow-ups, be aware of our body, and remember to take care of ourselves both physically and emotionally. But most importantly, we are survivors and we are stronger because of what we have been through. We definitely deserve to move on and live our lives to the fullest.

[ummm what?!]

Hi Sans,

Thanks for the post, congrats on being clear after the first screening, I remember that feeling very vividly... the whole family celebrated. I certainly know where you're coming from when you talk about the strains it places on relationships. As for reducing stress, my stubborn habits kept me pushing to hard in my job, to the point where I started a brand new job just before only my second monitoring checkup! Since then I've backed everything off and it's made a big difference but there still seems to be this instability within me that I can't quite shake off. I never used to be like this, or at least I don't think I was, so when I suddenly start having a panic attack it feels very alien to have to suddenly control my breathing and assure myself that everything is fine.

[Sans rt1]

You know, we didn't celebrate - probably because I had played it down so my kids and wife would not worry - I tried to make it out to be a formality, a non-event. That is probably why my wife felt the time was right to get things going again. I guess I was too good at "being strong" and she did not realize I was still dealing with things (maybe I was even fooling myself a little too). Well, she knows now (and I realize it too).

Last night we talked some more and it felt good to tell her about exactly how I am feeling - that as much as I try not to, I do worry about it, I just can't help but to think about the uncertainty (definitely made the right choice with the RT). Totally out of character for me as I am not a worrying person - I've always been good at putting things out of mind - "I can't do anything about it anyway, so why worry?". Easier said than done sometimes.

You are definitely right, we should celebrate when we get an all-clear. It is something that the whole family should celebrate. Thanks for helping me see that.

Yep. I may not get panic attacks, but I am beginning to realize that I may not be very good at dealing with things either. I guess being aware of something is the first step in dealing with it.

[ummm what?!]

Hi Sans,

You sound very similar to how I used to be before my diagnosis, congrats for being stronger willed than even I Yes it's definitely a good thing to discuss these things with those around us, I find if I bottle things up then I just end up boiling over at some point. It has happened at work, on the road and worst of all... at home. This thread has also helped me realise the need to deal with things, even if it hurts the ego a bit.

[Fish]

Hey Ummm:

I can definitely sympathize with you. I weathered my first case of TC fairly well, although there was a fair amount of anxiety along the way. My second diagnosis, however, was almost more than I could take. I became so paranoid and prone to anxiety attacks, definitely every time something hurt or a chest cold went on for an extra week.... it could be cancer. I finally decided I could't take living like that any more and a went to the psychiatrist. She told me that most MD's don't understand the effect that cancer has on patients (and families) from a mental health perspective, and that many cancer patients suffer from post-traumatic stress syndrome. With counseling and the use of mild meds, I can now manage the anxiety. I still get stressed out every time my check ups come around, but I can handle it. Like Sans' situation, my wife and I have also had to learn to talk more and to be more open about our feelings. It's really easy to mis-read someone if you're not communicating on a regular basis.

As Karen said, you deserve to be happy, do whatever it takes.

Congratulations on the 1st year of your new life!

[ummm what?!]

I became so paranoid and prone to anxiety attacks, definitely every time something hurt or a chest cold went on for an extra week.... it could be cancer.

Hi Fish,

I found your comment above quite humbling as you have been through far more than I, yet my own emotional strength proved far weaker. The one thing I'm getting loud and clear here, and don't stop it, is that we/I need to do something about the way we/I feel. There is no point going through life in this semi state when we could be enjoying our new found reason to exist!

[Sans rt1]

Ummm - -

Amen. You summed it up perfectly.

[Fish]

I don't think for a minute that you're weak. Much like pain, we all have different levels of tolerance for stressful events.

Believe me, I too find this site humbling when I see what other folks have endured. But we're all here to support each other.

I'm confident you'll find your way back to being happy again.

[dadmo]

Don't underestimate how much psychological trauma happens when you hear these 3 simple words “you have cancer”. Yes you need to be strong but when then strain becomes overwhelming look for help.

[ummm what?!]

Don't underestimate how much psychological trauma happens when you hear these 3 simple words “you have cancer”

This seems to be something that we've all had trouble dealing with, understanding. My cancer news was generally quite public among family & friends, for goodness sake I wanted everyone to get themselves checked but it soon became apparent that not everyone "got it" when they saw me struggling to cope with what had happened a month or so after radio. It all hit home though when a workmate accused me of taking time off during radio simply to take time off. I think it was probably the single most insulting thing he could've said to me at that moment, he was implying that I was at home having a good time whereas the truth was I was so drowsy I could barely manage anything more than getting more ginger beer from the fridge (for the queezyness) before finding a good place to snooze.

[dadmo]

My son was diagnosed more then two years ago and my wife still cries. The pain in her heart is still so raw that last night I spoke with her about just finding someone to talk with.

[Sans rt1]

Ummm - -

That workmate of yours was sure showing his ignorance - I hope others heard the comment and now realize what a uncaring jerk he is. Imagine, wanting to take time off just to take time off during RT - Yeah, as if you were off partying and having fun. I guess I was very lucky - my workmates willingly covered for me and my managers told me to take whatever time I needed - and actually still ask me if I am doing too much too soon . . .

I am struggling because of a couple of my friends have become distant - almost seems they are avoiding me - since my diagnosis. Particularly it is my best friend, who I have not seen or actually spoken with since the day of my ultrasound when I told him that I probably had TC. When I told him, it seemed he could not get me out the door fast enough and I am not sure he even heard me when I told him that I was going to be OK. I've regularly called and e-mailed him to keep him up on the progress, and he has sent brief e-mails and phone messages, but always has excuses why we can't get together, etc. Through this all, it has been tough not having my best friend to talk with about this.

I've decided that this has gone on long enough, so I'm going to show up at his door unannounced and get to the bottom of what's going on with him. I am assuming its because he can't deal with my TC, but I'm also afraid that it might be because something is going on in his life that he does not feel comfortable burdening me with at this time.