Grappling with reality

[mensana]

Well, the bomb dropped today. And I was right in the middle. Saw the surgeon and after so long being kept in the dark everything was suddenly revealed in all its grim, gorey detail. The cancer is on one of the main bronchial tubes. Doing nothing gives me about 3 to 4 years. Radiation therapy doesn't give me much more. With surgery they could remove one whole lung, or a half. The whole lung removed would put a strain on the heart. The surgery itself would be tricky and risky. The half lung would be a simpler procedure. But until they get in there nothing is certain.

The surgeon was quite blunt about it. There were three others in the room besides me, the care coordinator, surgeon's offsider and the surgeon. I looked to the other two as the surgeon delivered the blows. But they only looked back in stoney silence, and the blows kept coming. I felt very alone and vulnerable. Throwing out a few one liners didn't change anything. Certainly didn't lighten my feelings which seemed to drift between shock, fear, and confusion. The surgeon said he was putting it to me straight. I replied,' you won't mind me clinging to a bit of denial?' Would have to be done in Adelaide. Two weeks down there, then another four weeks back here.

It was a long walk back to the car, parking is murder around the hospitals here. You can't leave your car anywhere close. As I moved further from the hospital I seemed to move into a cloud of numbness. It was there all the way home. The frightening thing is what happens when the numbness goes. I don't know what to think now, don't know what I'm going to think later. I'm afraid of giving in to weakness. That weakness would make me weak, and make things harder to deal with.

The only sure thing is that this has to be dealt with. Just hope I can stay focussed, and be positive. But the days are long, and the nights are longer. Tomorrow there's another appointment with the (new) GP. Maybe by then my mind will be a bit clearer. But at the moment it feels like someone reached in, grabbed my brain and wrenched it around in my head.

[Dee58]

@mensana

I'm so sorry! I wish I could say something that would make a difference but our English language doesn't have sentences/words for situations like this - except perhaps for a select few swearwords that wouldn't be appropriate in print...

Donna x

[Budgie]

I'm sorry.   I am glad the surgeon was straight up with you.  I know it's awful, but it's the best way to get bad news.   When the op goes ahead, I really hope it's not as bad as they say.  

As you said, it has to be dealt with.  The only way to do that is to keep a good attitude.   Try not to dwell on the bad thoughts that will come.   Also, if you find the need, ensure you get some counselling.   

Just remember too, that we are here to listen to you vent whenever you want.  Please take care.

[mensana]

Thanks @Dee58, @Budgie.

Everything is out of whack. Up to now I haven't slept for 40 hours. Last night I was feeling too scared to go to bed, worried that I wouldn't sleep and just end up grinding around the day's happenings in my warped mind. I don't really want to think, so I just kept loading up the next DVD. And then it was morning. So successful was the blanking of the mind I forgot the GP appointment. Rang last minute to cancel but I had told the doctor when he previously rang me that I might not be able to make the appointment anyway.

Later I met up with a friend from WA who is also an amateur naturalist and we went bush. Spent a number of hours bashing our way through scrub and shoulder high grass, as well as sloshing through swamps. This friend doesn't know about my condition so there were no reminders. Nothing that triggered my mind to delve into unwanted thoughts. And it was good having him there as he is a bit older and less fit. Kept me from overdoing it and staying out too long.

Now back home reality may try to raise its ugly head again. Despite the forty sleepless hours, including the hours of strenuous exertion, I still don't feel tired .... yet. Apart from the relentless cough I feel healthy and fit. So, how could anything be wrong? It's all about feelings, and I feel fine.

[Dee58]

@mensana

milk that great feeling for all its worth! I'm a great believer in mind over matter... my oncology team (Drs AND nursing team) keep asking me every day if I'm in pain YET and reminding me they have some great drugs waiting for me etc... and I just say no I'm great... just take a couple of panadol if I have to and they just look at me like I have 2 heads.

You see, I decided right at the beginning I was going to experience this on my terms... just because others had certain experiences did not mean that had to be mine. I actually told my oncology doctors that and they agreed with me - and once they did that it reinforced my belief. Which is my way of saying use how you are feeling to your advantage 🙂 x

My dog and I got lost on a bush walk last weekend and ended up truding thru swampy bit along the river edge and I had the wrong shoes on and my dog had a smile a mile wide, loving it, and I got smacked in the face with a tree branch and cracked up laughing... it was so silly... and I loved every muddy, face slapping, cobweb-walking-into, mozzie biting minute 🙂 Like you, that experience totally made me forget I had cancer and having treatment and that I should be tired... I was just having fun... so I think I know what you mean... maybe you can talk your friend to go out again with you... or another friend...

Here's to you feeling better every day!

x
Donna

[mensana]

Dee58, way to go! That friend is returning to WA, heading to Kununurra end of the week. But we stay in contact because of our mutual interests.

Where I get long or strange looks I usually say "Don't send flowers yet, I'm still alive and while I'm alive I'll be living."

By the way, you asked before, the 'incompetent doctor' referred me as a public patient even though he has my medical insurance details in his records. When I raised this at the meeting with the surgeon I was told it's not an issue now as things are going through and I'll get the entitlements covered by my insurance. I've had private cover most of my life.

[mensana]

Talk about burst bubble. My numbness and whatever might have followed it were shattered today for sure. Had the appointment with the GP today. First spent a lot of time with a nurse and she was quite good, very supportive. Left with an 'inner glow'. However, after a shorter session with the GP everything seems to be falling apart. Sort of like I'm standing on a pile of sand with the tide coming in washing away at the sides and I'm powerless to stop what's about to engulf me. The vast brooding ocean behind the tide looks so dark and ominous.

The GP gave me a wad of papers titled "Advanced Personal Plan". He wants a copy of it when it's filled out. He wants me to see a dietician and a psychologist. With regard to the psychologist, told him I was going okay but he kept insisting that I would need it. He kept saying that while I thought I was going well I was likely to make wrong decisions. In the end said I'd give it a go. The only thing is that trying to book an appointment they said the earliest was in 12 weeks. Not much help now, nor for quite a while down the track.

Back home tried to lose myself in my usual distractions. But it's not working so well. Hopefully this is just a temporary blip and I'll get past it soon. Rang the Cancer Council here in Darwin and made an appointment to see one of the counsellors tomorrow. Feel a desperate need to talk to someone, but don't know what to say. So now I just have to get through tonight. This roller coaster is making some wild swings.

[Dee58]

@mensana

sending you a cyber hug ... sometimes a hug says more than words ever could... and this coming from someone who would never hug a stranger 🙂 I think a stranger with Cancer getting a hug via cyberspace is allowed under my hug rules 🙂

Stay strong. Expect the best and though you stay aware that it might not turn out that way but you have to allow for that possibility and not just focus on a bad outcome - I believe you get what you focus on most times - unless it was something that was never meant to be for you...

Don't let the handing of Advance Personal Plan papers scare you - I believe this is offered to everyone - even me 🙂 And my oncologists are confident on a good outcome for me - but I still got handed those papers too... so don't dwell on them and think the worst...

How about think they CAN do surgery, and they DO do surgery and it works for you? Dreams are allowed 🙂 Go for the best ones.

You know another way to look at this is even if you dream for the best outcome and be positive and feel glad inside that you are going to have this best outcome, even if it does not turn out that way at the end, in the meantime your positive outlook made you feel better during a trying time and isn't feeling better about a situation, a nicer way to 'be', than feeling doomed and stressed and afraid etc? You might not have any control of your physical illness and planned treatments and eventual outcome BUT you have complete control over your own mind and how you want to handle each day.

Your days can be miserable to match your illness OR they can be lighter, almost but not quite normal, where you focus on pretending you feel healthy, happy and great.

Where there is life, there is hope - and judging by the fact you are posting It's a good bet that you're alive 🙂

So just tell your medical team okay, I'm aware of the worst that can happen, but let's aim for the best that can happen and I leave that in your capable hands 🙂

Don't know if this will help you but I'd like to share an analogy that always helps me in life - in every situation and including my current one... it's the one about the man who felt sorry for himself because he had no shoes, until he met the man who had no feet.

Sure to others, my friends, I am clearly the man with no feet to them, but from where I stand, I have feet. For me a person with no feet is a fellow cancer sufferer who is only young... a young mother with a couple of small children, who maybe do not have a father because he left, died, and left her a single mother to raise 2 young children and now she has cancer and may die and maybe she also has no family to look after her babies when she dies... now THAT is someone with no feet in my book.

Back to your email... wow 12 weeks... book it and if you find you don't need to speak to them in 12 weeks time you can always cancel.

Sorry about my long email... I'm a touch typist and type as fast as I think 🙂

Feel better - sending you positive vibes x

Donna

[Budgie]

Well said, @Dee58 .  I agree wholeheartedly. 

And yes, they do push Advance Care Plans towards people now, even if you're just going in for a simple operation, in some places.

It's great that you're seeing someone from the Cancer Council @mensana .  Talking does help.  I'm lucky - my husband has been a counsellor for work, & we talked alot about what we were going thru, & still do.   We download to each other, joke about things if we can & get on with living.   I hope you get great benefit from it.  Now, you need to work on your sleep - I hope you get some.  Take care. 

Cheers

[mensana]

@Dee58, @Budgie thanks for the support you've been giving me, love you both for it. It means a lot. I wasn't sure about opening up on the forum as in the every day world I keep my issues to myself. Questions of "How are you?" are always met with an unhesitating "Really good". Being able to let the undercurrent of feelings come out helps in dealing with them.

Today that vision of the endless black ocean trying to envelop me was so real it scared me. But after doing some work at home and then getting lost in some DVDs (don't have a TV) the image has faded into the back ground. Still haven't made the move into bed though. Just feel it's not going to work well. Having dozed off during one of the DVDs has taken the edge off any tiredness, so in that way not very helpful. But I do feel a bit more at ease. So, just had my warm milk and honey, and with renewed optimism it's off to bed. Wish me luck.