Post Chemo Life

@kezmusc I wonder if these kind doctors really understand what these moments of empathy mean to us. I was sobbing my eyes out after my re-excision, alone in my room when my surgeon came in. It was late in the day, and I know he had a wife and kids at home wIting for him. He sat with me for ages and was so gentle and kind. It was one of the kindest anyone has ever been to me. He created a lifelong fan that day.

The PTSD is an interesting thing.  My gp actually mentioned the same thing when I went to question the rapid weight loss I was experiencing..  She said it was more likely to be the stress and anxiety of things rather than  the drug  and that a cancer diagnosis and treatment is very similar to PTSD.  Her father had recently been through bowel cancer and he, after being in the Defense force for many years,  said the psychological side to it is very similar to what they see there.

Our health care system is second to none and so are the breast care nurses, 

 I remember waking up in hospital on day three after surgery just a mess.  I could not stop crying. The doctors did their rounds and when they left my room one of the younger registrars stayed.  He could see how upset I was and took the time to tell me his mother had been through the same just last year.  He understood as he had seen it first hand up close and personal. He kneeled down beside the bed and said "It won't feel like this for ever".  His mother had told him that she would pretend she was flying a plane through the clouds and just kept aiming for the sun until she got through them.  Those few kind words of his stopped the tears and I felt instantly calmer. So thank you Andrew the registrar for taking the time to stay for a moment.

Couldn't have put it better @kezmusc.

You're totally on the money @Sister. My oncologist is not yet menopausal. How can she possibly understand the night time viciousness of half hourly hot flushes?

It's one of the reasons Liz O'Riordan's blog is such good reading. I am SO pleased she's putting her experience as a breast surgeon who got breast cancer to good use.

Being told as I was that I'll feel "off colour" and want to just sit on the couch for a few days doesn't really touch the lived experience of fatigue and the first 10 days of any chemo cycle! I do get though that the doctors have to walk that fine line of informing patients while trying not to scare you shitless, at a time when most people are already scared shitless. I would have appreciated a more honest approach though. Something like 'you'll probably feel absolute rubbish but it will pass and remember that you're doing it to maximise your chances of a long life'.

We are so blessed with our healthcare system here. Maybe we expect too much from it? I think a counselling/information session about the emotional effects of breast cancer would be valuable, though picking the point at which to deliver it would be tricky. I was really pleased to find that a Wellness Coordinator is now on staff at the new Eastern Health Breast and Cancer Centre in Melbourne. I think it shows that the medical community is aware that this is an important area of our treatment.

My psychologist told me something interesting the other day. She said there was a study being conducted to see if a diagnosis of breast cancer should be treated as an event that causes Post Traumatic Stress Disorder. Apparently the psychological markers are almost exactly the same as PTSD. She said a BC diagnosis is clinically considered as a 'major trauma'. Yet somehow many medicos almost downplay the emotional side effects. That's where breastcare nurses can be so fantastic, straddling the line between the two.

I do consider myself very lucky that my breast surgeon seems to get this more than others. He took the time to comfort me when I was very distressed. He acknowledged my despair but didn't sugar coat the realities.

It would be wonderful if we could all have a team of perfect doctors but that's an impossibility! They are flawed human beings just like us.

I hope everyone is having a good Sunday. K xox

I agree @kezmusic I think that’s a great idea about the emotional side effects. It’s definitely has an impact on our lives doesn’t it. And @AllyJay I too have forgotten my PIN number a few times standing at the ATM with a line up of people behind me and felt like a wanker and even not that long ago forgot where I parked my car in the car park at the shops. I usually always park in the same park but this one day I just had to pop in quickly to grab something and parked at the closest end to the that particular shop as I couldn’t be fucked walking that far and wasn’t in the shops long and freaked the fuck out and could not remember so it was funny as shit walking around the car park with my car door remote pressing it until it started beeping and I eventually found it but bugger me it was frustrating and funny at the same time. I just had to laugh or else I would of lost my shit over it for sure. I’m relieved I don’t have to take post treatment meds like some of you guys do as I was triple neg and from what I’ve read they can sometimes be a bit nasty. But at the same time sometimes feel a bit “unprotected” as I don’t take any and again can lead to the emotional side effects we all talk about. Margie xx

There are just some things you can't possibly understand unless you have felt them yourself. That goes for most things, you can empathize but not on the same level as having been through it.
 I guess the point is that when you do your chemo education you get a list of possible side effects, watch a little video and talk to the nurses.

It's kind of like.  Here's what might happen. 
Take that for that
If this happens do this
Stay away from sick people
Don't poison any one around you
Don't expose your partner and family to the toxic drugs that's being injected into you it's not good for them LOL!
The list of potential long term nasty effects is quite short and the percentages on paper of these  things happening is quite low. 

So I think the problem is that you expect once treatment is finished it's finished, you feel better and life returns to normal.  That is the part that is missing. The part about how long it might take to feel normal again.  The lost feeling you get when treatment does end and you really don't know what to do next.  Just go back to your old life?  Should you be doing something greater, more worthwhile, running marathons, climbing mountains?  Or should you just be happy you can go back to your normal life and continue?  Is it ok to feel pissed off that had you have known you may have made different choices along the way? Could you have been more prepared? Possibly or maybe not until you were there.
 Maybe there should be a pre treatment counselling session included prior to starting treatment on the emotional effects rather than just clinical side effects?  

Not sure

@Sister - I definitely think u r right - u have no idea unless u have experienced it. My oncologist was talking about fatigue, and I was thinking I would be ok and be able to get through it. How wrong was I - fatigue is a tiredness I have never experienced in my life - makes me feel like a newborn kitten - definately would have never known the extent of it if I had not experienced it myself. 

I would say the same situation applies with male obstetricians.  They've never had a period, let alone a baby. In their training, what they learn, they learn from books, most likely written by previous males, and by watching others, (in years gone bye, mostly also males). The experience of pregnancy and childbirth are not experiential for them, or either for female obs who have not yet become mothers. Their admonitions to "breathe through your contractions" is theoretical to say the least. I doubt they would advise another patient who for some bizarre reason or other was pooping a watermelon, to do the same!!

I was out on my morning walk which often is a time for reflection and started thinking about beaches and surfing and rips.  This led on to thoughts about the difference between "learned" (theoretical and practical) knowledge and "experiential" knowledge.  Of course, because everything does, this cycled back to cancer and treatment.  I then thought of this discussion and other similar comments that have been posted.  I wonder if the problem is that the doctors lack experiential knowledge of the treatments.  Not that I, for one moment, want anyone to be diagnosed with cancer and have to have chemo or rads or anything else.  But while these doctors are the experts at determining the course of treatment and have seen many people go through it, it's not the same as actually experiencing the treatment and no amount of reporting back about side effects can replace that level of understanding.  For example, how can someone who hasn't experienced it really know what I mean when I say that after chemo I feel like a jellyfish - as if my bones can no longer support me?  I think one of the network members at one time said that she had more empathy from her GP who had herself gone through treatment.
Okay, philosophical moment over.

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@Sister Hear hear