Results day tomorrow

Hi, I know how you are feeling as will everyone else on the forum. I actually saw mine results online on my NHS app. Thought it was bad to be honest to put it on there before it was discussed with me but it was all good. Once you get tomorrow out the way you can get on with your life till your next scan. You have to program yourself for that in the future. I find it very hard a month before and then afterwards waiting for the kidney nurse to call. The main thing is the offender has been removed. Like me yours was picked up by chance and we must count ourselves lucky but that can be very hard especially when friends and family tell us that. That can be called positive negativity. The stress of it all is very hard for someone who hasn’t been through it and are still having to live with the fears of the future,  to understand. Let us know how you get on won’t you. There are so many supportive people here to talk to x

Thank you Cilla

Really appreciate your reply sorry that's how you found out about results that's not right glad results were good though.

Thanks for sharing 

Will share how things go tomorrow. X 

Hi Pam, I know exactly how you feel - about trying to positive but also having that dread and fear. I too had a tumour of a similar size to you discovered incidentally and had same op as you last year at the end of November. I feel lucky it was found before it got anywhere else (as far as could be seen) but also unlucky, as my cancer is high grade so I'm having Pembrolizumab immunotherapy to help prevent recurrence. It was all a shock - firstly having to have the op then finding out the grade, which was a blow, I'm not going to lie, hope it doesn't make you feel worse. But I look and feel well right now, so just have to hope it's doing its job. But I'm coming up for a CT scan this Friday, which will be 5 months after my op and it brings all the fears up that I manage to bury/ignore most of the time. You try to predict how you will feel if it is bad news but you can't really imagine it! I don't know if it will get any easier in future times but I think not most likely!. And even if they find nothing, I will be afraid to feel relieved in case I jinx myself for next time - there's no logic in it, I know! But knowing I'm not alone in these feelings does help a little so I hope it helps you too. I wish you all the best and hope you have good news - will be thinking of you tomorrow.

Thank you for your wise words that's exactly how I've been feeling.  I got some very positive news yesterday and realise I have been very lucky it was confirmed yesterday my tumour was a clear cell renal carcinoma but low grade and low risk of reoccurring. So yearly scans for the next 5 years.The only concern  was I was told my kidney function was lower than expected putting me in the category of chronic kidney disease I had some more bloods done yesterday to check again.

I am wishing you all the very best for Friday and on going success with the Pembrolizumab treatment.

This group has really helped me understand and process my feelings when I've felt lost x 

Hi Pam72 !

We're not wired for dealing with problems-with ourselves. We find taking care of others natural, but feel awkward when it is us. This is especially true when you are the one everyone depends on. (leaving that long topic alone).

In fact, it is so unfamiliar/embarrassing/role-reversed that we may think thoughts like we're creating problems for our loved ones, when we are used to being "the strong one". We just don't do that every day-especially when it is more than a simple cold, etc.

I know I wasn't used to the grave, hushed discussions from those making sure I was ok. I'm upbeat not because I'm compensating, but because the cancer has impacted my daily life so little. I'm still me. I still do what I like, and if anything, cancer has predictably made me appreciate others, relationships, mortality, etc. In short, I'm consciously thinking about having days where I empower others I meet. Just that act makes me feel better-like I'm using my days effectively. Before cancer, I was invincible, and dragged through each day as they blurred together.

You can't adjust and reset yourself in a few days, as there are a lot of moving parts in your head, and they are used to doing things a certain way. Like anything else you've done that involved, it seems impossible at first, but when you look back you are astonished at how well you've adapted, and even thrived as a result.

Give yourself half a chance to assess and recover, regroup and replan, and you will be on your new path in your own time, at your own pace. Let it happen naturally, eh?

pat
:-)

Hi Pat. I find your post very interesting! Some of the things you say really chime with me and I love what you say about adjusting gradually - I think those are wise words. But I'm curious that you say that 'cancer has impacted my daily life so little' because I think that's at odds with the other things you say - it seems clear your whole perspective on life has changed - but maybe you mean in practical terms? I feel that my life has irrevocably changed, because the future seems impossible to visualise - will I get to do or see any of the things or places I have thought about so often? For me, because of my age (59) I don'y know if I will work again and ask myself should I take workplace pensions - I had planned to work till state pension age previously, which would be 67 in my case. This feels like a big deal to me, because to some extent, your work forms part of your identity and not working marks you out as being in a different stage of life. So I feel I have been propelled into that prematurely. I also have a mum who is poorly so I do a lot for her and spend a lot of time with her, which I am happy about - but sometimes conflicted! I know everyone's situation is different. A little bit of an off-load from me! But I do really like your positive attitude - it is true that the thought that you may not have as long a life as you'd hoped, or even that you can't take future health for granted, makes you appreciate the good things you have in your life and the ability to do things you enjoy more.

Starlady said:

Hi Pat. I find your post very interesting! Some of the things you say really chime with me and I love what you say about adjusting gradually - I think those are wise words.

That's kind of you to say. Everyone wants to be appreciated.

Starlady said:

But I'm curious that you say that 'cancer has impacted my daily life so little' because I think that's at odds with the other things you say - it seems clear your whole perspective on life has changed - but maybe you mean in practical terms?

That's fair. You got me there. I tried to express my condition hasn't negatively impacted me to the point that I've had to do less of what I need/like to do. I am not "glad" for it, by any means, but after doing so much volunteerism in/with a hereditary disorder in my wife's family, I have found that a safe space to comment from is one which takes something positive away, or even learns, from even the most dire and negative experiences. ex: Someone treats you badly. What did you learn about them and yourself?

Starlady said:

I feel that my life has irrevocably changed, because the future seems impossible to visualise - will I get to do or see any of the things or places I have thought about so often? For me, because of my age (59) I don'y know if I will work again and ask myself should I take workplace pensions - I had planned to work till state pension age previously, which would be 67 in my case.

I don't know anything about you beside what you have shared, but it doesn't sound like you will ever stop 'working'. What you now how the option of pursuing is work that is rewarding, or even fulfilling to your being/soul. That, of course, is work to benefit others who will never be able to repay you-the work that comes from, and enriches, your soul.

Starlady said:

This feels like a big deal to me, because to some extent, your work forms part of your identity and not working marks you out as being in a different stage of life. So I feel I have been propelled into that prematurely.

It is a big deal. They say that people have a job, a career, or a calling. That calling comes to you in the way that works best for you; In a way that you can't deny it as what it is.

As for the 'work until you drop', and not working (traditional definition) means you are a failure, I agree 100%.

<soapbox mode on>I am vocal about my distain for a society that teaches us that working hard all our lives and retiring with a meager pension is "success". This hammers out creativity and thinking of helping others, and makes us focus solely on ourselves. We settle into a grind, working to pay bills and taxes. I dream of a society that promotes and encourages taking care of those that can't take care of themselves, and only then worries about taxes. I guess my mini-rant expresses my wish for you to be able to do what is right for you AND be able to [afford to] do what is right for others. Doing good by society should therefore pay the bills, too, IMHO. <soapbox mode off>

Starlady said:

I also have a mum who is poorly so I do a lot for her and spend a lot of time with her, which I am happy about - but sometimes conflicted! I know everyone's situation is different.

You both benefit, and nobody on the outside (who has never had to care for a loved one) could possibly understand.

An example from my own experience being how routinely caring for a [severely] disabled child, one is approached often by people saying, "How do you do it?", or, "I could never do it.", things like that. To the parent, they have no idea what the onlooker is talking about. Do they think this is undesirable for me? Do they think it is work that I dread?.

The lesson we learn, and it sounds like with your mum as well, is that you discover that the strength-the power-you have within you to love is endless. It seems like nothing for me, and a welcome 'burden' that I eagerly saddle, knowing it is best for who we love. People would frequently say silly things like that to me, and eventually I'd answer, "So what would you have me do? Just stop? Give up?". To your point, perspective is everything. :-) How your mum must love you.

Starlady said:

A little bit of an off-load from me! But I do really like your positive attitude - it is true that the thought that you may not have as long a life as you'd hoped, or even that you can't take future health for granted, makes you appreciate the good things you have in your life and the ability to do things you enjoy more.

Thank you for your gracious reply. FYI: I'm only 5 years your elder, so we're in the same boat, you and I. There are unofficial stages we all go through when we experience a big, non-chronic change in ourselves (like cancer) that I've observed over a long life of caring/observing, and they go [very] roughly like this:

- Introduction/Discovery - you find out [shock, denial]
- Understanding - what in your life will change [depression, uncertainty, helplessness]
- Adjustment (physical) - routine changes, lots of appointments, tests [more uncertainty, what-ifs]
- Realization (diagnosis) - you now know exactly what you have, remedies, cures, how/if it will grow, etc. [research, find groups/forums for answers]
- Numbness (psychological) - this new me isn't really me, I need to get back to me [denial, my old life is over]
- Time - everyone needs a different amount of time here to move on, and it can't be rushed. You just know.
- Adjustment (psychological) - picking pieces of you back up, regaining your familiar routines [my life isn't over]
- Assessment (re-evaluation) - maybe it isn't the end of the world, after all [start to feel defiant]
- Defiance (fight back) - who does this cancer thing think it is, pushing me around?! [a new goal/purpose]
- Outward Focus (empathy) - it pains you to see others not yet as far as you are, suffering, and you can't resist helping them feel better. Volunteerism, outreach, public speaking, even counseling.

Others can say the better, but this is what I keep in mind when I care for, or even communicate with, those walking this path (for lack of a better, more respectful term). You can't help but remember your grief when looking at someone recently diagnosed, or in the stages of coping/realization. But more than anyone who reads about cancer, your words as another traveler on the same road are invaluable. You've been there.

I tell my kids that maturity has nothing to do with knowledge, wisdom is due to experience, and you are not truly mature until you have become a volunteer to help others. Maturity is moving from self- (or inwardly-) focused to outwardly-focused.

You already know what this tastes like through your helping your mum. You seem like the kind of person that will find even more enrichment in life by becoming a pillar of strength, an example, and an inspiration to/for others. Stay strong for yourself, and those who are motivated by that strength.

Everyone has greatness within them, and even I can see it plainly in you.

pat
:-)

[Mods: Any observations, methodologies, experiences I may share are not to be construed as medical or mental advice, and are 100% of my own unqualified creation. Nothing is a substitute for real professional help, aid, or assistance-nor should there be. I share only my own experiences as an unqualified lay person, and any similarity to actual, approved processes are purely coincidental. Anything I may say (type) should be considered strictly for discussion and conversational purposes. Grain-of-salt law applies]

Yes , my wife and I have grown up kids and have fostered for years and have never done a lot on our own as we have always had lots of kids around us . We have loved it but now with my diagnosis I do not believe we will get to do those things when we are older . We have also an adopted son who is 7 . We are 56 and 53 and I don’t think after getting a T3A tumour ( grade unknown yet ) I will be around at a time when we can chill together and start to go on holidays on our own . Our family dynamics would not allow that to happen now .  It destroys me to be honest .  We have no regrets but our plans are over. 

Hi Phil, do you have an appointment date yet to discuss your results? Can’t be long now surely ? I have been wondering how you are doing x

 philw ,

Fostering and adoption is fantastic! Always something different/new with all the age ranges! A loud house with kids in it is a happy house.

I wouldn't cancel your plans too soon, as I had a main tumor so big I had trouble bending over, and it built it's own blood vessels through my kidney to get to the unfiltered stuff. It was so big that over 1/2 of it's mass was dead, being on the inside/early parts as it grew outward (kind of like coral?). After that, I've been getting scanned every 3 months, and had Keytruda for the first year. I'm 10 years older than you guys, and only after almost 2 years of scans to use for history have they noted a 5mm "incidentaloma" (love that word) on the remaining adrenal, which itself is 5mm.

Wed am this week is a biopsy, as when they do the adrenal gland test (TPTB: I'm consciously not mentioning medicine names), the 'oma' did not alter the expected cortisol level. IOW, if the 'oma' had altered levels of any kind (be active) they wanted to take the adrenal gland out with it. I may have dodged a bullet on this one, and be able to keep remaining kidney & adrenal, which would be nice.

Look, we live in amazing times-at least medically. In the UK where you likely are, life expectancy is 80.9 years, with the US at 77.5 years. But where generations back, the last 1/3 of a life was spent infirmed, immobile, or inactive, advances now have us living pretty normally until we keel over. The whole concept of 'retirement age' has changed from 55 to ???.  Most think of retirement as a signal to change careers, switching from what they HAVE to do to what they WANT to do.

Family around us that are just one generation older now were in horrid shape at our age. Now, in our 60s, without really trying that hard, we have all our teeth, dress nice, get out, travel without restrictions, and are basically still in our 40s... When you are my age, you will be seeing your 7 yr old off to Prom. Like me, you can have serious cancer, and because they're watching it/you, it won't be able to sneak up on you with a big tumor. 

Please don't let this thing destroy you. The only reason you think it might is because it wants you to think it will. Ask a doctor you trust, or more than one, about length and quality of life ahead. This isn't our parents' or grandparents' cancer, which was an automatic death sentence.

Find out what to expect, so you can climb out of this funk and show that cancer whose boss!

pat
:-)