New to the group

Hi Tim, and welcome to the group/sorry you have to be here. Sounds like you've been through the ringer!

So they are still doing treatment with you? Hopefully side effects are tolerable and effects worth it. In my case, the only treatment left would give me a few extra months maybe, but I'd be sick the whole time, so I'm forgoing it (on my oncologist's advice, actually).

I too have felt some liberation since I found out I'm dying sooner than expected. I mean, to be honest, I mostly feel sad and angry about it, but you have to acknowledge the silver linings! I don't have to worry about work issues anymore, or building a bigger career. I no longer am concerned about possible character flaws that I used to say I should get around to fixing - don't give a flying f that I can't do small talk, and am super nervous still at parties. I asked to be taken off any meds that I was taking for long term health - who cares about high cholesterol? No more stupid mammograms. No more saving for retirement, although I'm being a little frugal so I can leave my wife and son well placed.

I personally wouldn't worry about not having a bucket list. I think some people want to go skydiving and tour the world before they die, but some people don't. I have 1 or 2 things that might be my "bucket list", like I visited where I grew up. But mostly I just try to make sure that I do things that are meaningful and enjoyable to me, and that is spending time with my family primarily. Doing things with my son and wife while I can. Because really, I had ticked off most of the things on my personal "bucket list": good relationship with my wife, a child I adore, a job I enjoyed and that I was proud of while I was able to do it, I'm able to help my extended family out a bit now. For the rest, it's little things: gardening, for instance. And I called up my local animal shelter and now spend a few hours on Tuesdays playing with their puppies. Without guilt about not taking an animal home. Oh, also, I'm doing little things to make my life easier. I think I might get a new/used car, because I have an old clunker and I'd just like to have a "fancy" (for me) car (which for me means one with electric windows, remote locks, bluetooth, a back up camera - my car doesn't have those things). And I'm buying audiobooks, whereas before I restricted myself to ones I could get from the library. It feels like I'm treating myself. Silly things, but they are meaningful to me.

Are there things that perhaps aren't "exciting", but that you'd like to do? Things that make you smile?

And if not, if you already do or did those things, then more power to you!!!

PatriciaV

Hi Tim and welcome to the group it's a rollercoaster of a ride you will have good days and bad days but you have come to a great place here as we are all one big family who will support you no matter how you feel day or night

Welcome to the group, sorry you have a need to be here. It took me a good while to get my head around things. Then I focused on enjoying the days when I have the energy and making the most of the days when I dont.  Like you I eat what I want when I want. Even had cake for breakfast the other day. One thing that always scared me was getting Alzheimer’s now I know that won’t happen so that’s a positive.  I don’t have a bucket list I just do what I want when I want, gave up work, sleep in, get up early, go to bed early, go to bed late it’s my life and it’s so liberating to not be ruled by a clock or a schedule.  I hope the side effects settle and you get to enjoy your time

Thanks Flippen

HI Richard, thanks for the reply. It seems you have a good approach.  You really can do what you like when you like!

Hello Patricia, thanks for your lovely reply.

It sounds that you're in a worse place than me, i.e. beyond treatment, but in some ways I envy you!

Treatment isn't treating me well!  If you know what I mean.

I really would like to spend my time doing the things I like doing, but I'm finding, with treatment, I  can't do them or I don't enjoy them any more.  Fatigue is debilitating me and I have had that for 14months now with no reprieve.

Eating which I used to be good at and really enjoyed.  Now it's great I don't have to worry about being overweight anymore.  However, now I worry about losing weight and eating, sometimes is just torture.  No appetite, sore mouth and everything tastes like soap.   Even the thought of eating makes me retch.

Have put off taking antiemetic, but have now succumbed.  I hope it helps.

Like you, I have considered stopping the treatment.  I didn't expect it to be so bad.  The treatment I'm getting is for renal cancer. As yet I'm saying no to any treatment for my prostate cancer.  Unless that has any immediate effect, I don't see the point.

My biggest issue is I can't give up yet because of my wife.  Bad enough that she'll be widowed when I'm gone but in addition, as yet she's not a British citizen.  She has only just completed the 5 years she needs to live here to enable her to apply for permanent settlement.  It's only after that she can apply for citizenship. I think she needs this to survive here when I'm gone.  Otherwise she would probably have to go back to Russia.  I'd be horrified at that.  Russia at this time is a horrible place to live in. 

That's what's keeping me going.

Sorry that I should sound so negative, I don't really have much opportunity to have a good moan.

Hi again Tim

I totally understand. I had mucositis from the chemo, bad. And nausea - water tasted bad to me. It sucked.

Forgive me if I'm a little blunt here. I don't know if it's a British thing (I'm in the US) or what, but as far as I'm concerned, bring on the drugs. I think that if ever there is a time to take medications to feel better, it's when you have cancer. I don't know, maybe you don't like the side effects? But it is not "succumbing" to take anti-nausea meds when you are on treatment and need them. Nausea causes fatigue. It is so incredibly hard to keep trudging through when you don't feel good, and I'd bet you don't even realize how badly your feel anymore, it's been so long since you've felt well. Do you have pain too? Pain wears away at you too. Of course, we can put up with pain and nausea, but why? In our situation, why?

I opted to forgo treatment because what there is won't give me any time, really. If I had a chance to have 14 months more, even if I were sick, I would do it, for similar reasons to you. I have a 5 year old, and 1 extra year in his life would make a big difference. I commend you for hanging in there and doing what you are doing for your wife! It's important and matters.

Hope you can feel a little better as time goes on. And yes, a good moan is a good thing once in a while!

PatriciaV

Hello Tim and I'm sorry that, like the rest of us, you have to be here.

I, too, don't have a bucket list! There just doesn't seem to be a point in doing anything other than spending time with friends and family (although mine are too far away).

And I'm not good at making the most of every day. So DON'T be like me! If you have the chance, do uplifting things and fill yourselfwith positivity. Enjoy being liberated from the grind. Enjoy eating while you can - my side effects mean my mouth is sore and I am sick of Soleros!

I don't have an answer of how to enjoy more as I'm the world's worst but I do know I need to try harder so let me know if you find the secret.

You have inspired me to note down my blessings and I think that is a start. 

I hope you get some measure of peace and we can all keep hoping for a breakthrough.

Take good care of yourself and go and do something nice, right now! x

Thanks again Patricia.

I appreciate what you're saying about succumbing.  When it comes to anti nausea drugs there's a downside for me.  I suffer from Restless Legs Syndrome.  You may not be aware how bad that can be.

Two facts about RLS.  One is that it's partly due to a dopamine dysfunction, ( a neurotransmitter).  Two is, it can be made significantly worse by many common medications, e.g. sedating antihistamines.

The first treatment offered me for nausea was metoclopramide, which is a dopamine ANTAGONIST.  A treatment for RLS is a dopamine AGONIST, the exact opposite.

The second was cyclizine, a sedating antihistamine.

Having RLS is worse than nausea!

I asked my oncologist for Kytril, which is "RLS safe", but she refused on the grounds it causes constipation.  Hmmmm!  Despite the fact I have daily diarrhoea!

I have managed however to get my GP, primary practitioner to prescribe something.

I don't have any pain directly related to the cancer, but I do have other pains, e.g. a spinal neuropathy for which I have been taking a drug for about 4 years.  I currently have quite severe muscular pains in my legs and have just started a regular NSAID. It works!

I agree with what you say my motto is that if the benefit of something outweighs the side effects/complications.  

I would consider any drug that fits that criteria.

I am currently considering trying medicinal cannabis.  It's possible to get this in the UK and Europe.  However, I'm not sure I can afford it just at the moment. I'm used to paying nothing for medicines, but I would have to pay for this.

I'm sorry to hear you have such a young child.  That must be heartrending.  I hope you can manage to do all that you expect yourself to do as regards that.

Thanks again for your replies

Tim

Hi Tim, welcome to the group. I've stopped treatment now and have a few months left. I'm happily reconciled to it and am doing a couple of travel related bucket lists things. Next week we're off on a fjords cruise.

Apart from that I am just taking things easy, one day at a time. It's pretty nice after years of high pressure jobs.

Anyway, stick around, there is a great group here with lots of wisdom to share.

Much love,

Stuart x