Lost

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New Contributor

Lost

I have finished chemo and radiation and i was one of the lucky ones who got a clear pet scan.  I should ne on top of the world but instead i am lost.   I am struggling learning to eat again and other side effects.  Loneliness is eating away at me.  I want my old life back but it seems a pipe dream.  I dont know how to pull up out of the downward spiral i am on.  I know its wrong but i am ready to just give up.  Dont think i can take much more.

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Super Contributor

Re: Lost

Hi flick,

 

Well done on the clear scan and managing to get through everything.

What cancer did you have?

If you don't mind me asking, what are the side effects that you are having? You mentioned the eating...

 

Learning to accept the changes to your life can be a hard thing to do. You almost have to grieve for the person that has been lost. Of course, this all made so much harder because of the social isolation that has been forced on all of us.

It will get better.  Do you live with family?

 

-s

 

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New Contributor

Re: Lost

I had a tumour in my neck and base of tongue that o had no symptoms of only a toothache.  It all happened so fast. 7 weeks of radiation and chemo.  I will alone. I have no family near. I lost my sister and brother 7 weeks apart last year.  Its just me and my puppy.   

I cannot swallow. And i have a peg tube in. I get so exhausted all the time.   I try cooking soft vegies to eat and then too tired to eat it.  The struggle to swallow it just wears me out. 

I want to feel happy bit cant pull up. I am so angry at myself. L used to work full time  and wham everything is gone

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Regular Contributor

Re: Lost

Hey, I just wanted to let you know that I suffered as you have - but it gets better.  I think the big thing to address is mental health & loneliness --- if you can hang in there, the physical stuff gets better.

And for crying-out-loud don't 'give up'.  Succeeding in a fight against cancer and then submitting to depression, even suicide - it's like a weird Catch 22.  Just take a step back, sink in some information and perspectives, then form a strategy.  Things can and will get better, but yeah - it does hinge on YOU.

Let me give you a quick re-hash of how things went for me, then a suggestion.

I was diagnosed 4 years ago with stage 4 head & neck cancer.  Grueling treatment, PEG dependant, vomitting blood, awful constipation, all kinds of fun & games on the cancer merry-go-round.  The first week after treatment was the worst week of my life.  The first month was woeful.  The first 6 months were bad.  But it got better.  Honestly, it's still not perfect, but I'm still kicking, I'm a viable passenger on Spaceship Earth.  So are you.

I relied on the PEG as my sole source of nutrition and hydration for .. I'll say 4-6 months, I honestly don't remember and it's !GREAT! that I don't remember.  The fight is slipping into the past.  I used to take formula via PEG and then vomit it up (with some blood and pain) from the mouth.  It was awful and absurd.  And it's over.

No matter how far past treatment you are - the shitty cancer side effects will get better.  Just give it time.

The psychological stuff is a nightmare.  The worry about recurrent cancer is the worst, but loneliness and isolation can certainly come within spitting distance.  Alone is probably the worst word in the dictionary.  Hell.  Suffering.  Depression.  Those are just lesser synonyms.   Feeling alone and without anchor is horrible.

I'm sorry you feel that way.

But you don't have to.

Knowing that the physical stuff gets better and you just need to keep your head down (my advice is distract yourself with whatever gives you the most slothful pleasure - netflix, computer games, whatever floats your boat).  Anyway, knowing the the physical suffering improves ...

.. I strongly urge you to separate it completely, and look ONLY at the psychological stuff in the immediate short term.

Consider the loneliness, the feeling of futility - are you depressed ?  Do you still walk your dog ?  Take a proper stock of where you're at emotionally, how you feel day to day, whether it's sitting still, getting worse, or better.  (And tie that into your recovery physically - because if you're in the deepest pit of physical suffering, put off the stocktake for a week or two - things will start to get better, and wait until then to take stock).

But yeah, I'd urge you to do a good solid triage of your mental health, and I guess in my mind the areas I'd want to focus in on are pretty simple -

Loneliness/Isolation:  get a handle on how much of a problem this is, it sounds like a severe issue, but you need to wash away all the other stuff, get rid of the 'noise' and get a real handle on the problem.

Hope:  I reckon a bit of hope is vital, get a handle on how positive or negative you feel about the short & longer term future and why.

Fun:  think of the things you still enjoy (even if some of that enjoyment has been lost) and take stock of them.

With those 3 pieces of information, I reckon you could better articulate where you're at, either to a support community, or getting professional help.  Those communities are starting points - I think the journey is about creating relationships .. making a new friend, talking to people who understand.

So yeah, my example might be:

Loneliness:  I feel bereft and isolated, every day I feel as though nobody hears or understands me, cancer has changed me and I feel I no longer know myself or can relate to the people in my life

Hope:  I actually feel pretty hopeful that I've beaten cancer

Fun:  I really love binge watching teen dramas, and playing Call of Duty.

If that were my stocktake, then I'd know that focussing on cancer recurrence is a side-track, I'd simply look at connecting with new friends who better understand what I've been through (and also creating new strategies to better reconnect with my old friends, so we can both reach new platforms of understanding).

Sorry if some of this comes across as garbage - I think you need to break things down a bit, and - in breaking it down into it's parts, form a strategy for addressing each distinct part of the problem.

 

You've been fighting for your life.

 

Keep fighting.

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New Contributor

Re: Lost

Thank you so much.  I am 18 months post treatment and still cannot swallow food. I keep trying everyday. I am a bit stubborn in that.  So i still tube feed three times a day.

I am waiting on surgery for osteoradionecrosis and i haven't been able to find anyone who has dealt with this. All the time  waiting its spreading further along my jaw.  I have pain meds but they only dull the pain. I dont know if its because of the cancer, the deaths i have dealt with, the virus restrictions , the side effects but now i cant even leave the house without having a panic attack.  It just seems all too much.

I spend a lot of time reading from my kindle and chatting to my dog.  

I WANT my old life back so much but i cant even stay awake a full day let alone work.  

I should be happy i know. I beat the tumour. I am blessed but the emptiness and loneliness has taken over. 

 

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Regular Contributor

Re: Lost

I don't know about exposed bone - just that intense pain radiating down the jaw and side of the neck is a thing for me.  Plus teeth starting to go wonky.  Cancer is the gift that keeps giving, even after you beat the disease, that's for sure.

 

Connecting with someone with your EXACT diagnosis is probably a great thing (in terms of getting anecdotes on the treatment, recovery, all that stuff), but my impression is that your challenge is social/emotional as much as medical - and if you start to form bonds with people who have faced the same GENERAL challenges (cancer in general or your type specifically) I think you'll find groups of people out there dealing with some very similar situations and challenges, who could give you some empathy, understanding and a friendly ear.

 

(Whether a structured group, or looking for random new friends, that's up to you - but I'd just offer my impression is that you're kind of aching for human contact and understanding, a bit starved for basic human intimacy - not the rude kind - the kind where someone hears you, gets it, and reflects their understanding back to you).

 

Panic attacks are outside my direct experience, I just know a few people who have had them - agoraphobic type reactions, palpitations, the classic stuff.  I personally have a (completely not OK) tendency to trivialise them - a kind of 'take a tablespoon of concrete and harden up' dismissive attitude.  That's my personal reaction, because I respond to it in a similar way to reacting to a bully - if you start backing down you end up retreating for the rest of your life - the only answer is to surge forward and fight.  (But that's just me, gross as it may be, offering authenticity if nothing else).

 

Thing is - COVID is just about the perfect time to bundle up at home anyways .. and with the interwebs available, and sites like this one, there are communities to be joined and reached out to.

 

I'm sorry to say it - you won't ever have your old life back.  It's gone.  

 

That applies to everybody.  Yesterday is done.   Our only option is to keep moving forward.

 

My suggestion is - cherry pick the best things out of your new life, and celebrate them, and find new and better ways to enjoy them.

 

AND - also cherry-pick the WORST things, itemise that list, and try to have a specific strategy to deal with each of them .. one at a time or concurrent, whatever is best - but in tackling a problem, even failing spectacularly, you take a kind of control - whether the outcome is good, bad or indifferent, I think taking that approach helps a person's outlook generally.

 

LASTLY - get on the front foot with the sadness and social stuff.  I know life can be an utter shock-tacular shit-show, there's no two ways about it.  I'm a recluse-by-choice, I personally focus on my 3 young kids & spouse, as such don't really have the space to form honest new relationships .. but I promise you there are wonderful and lovely people out there waiting for you.  You can navigate together to new understandings and truth.  My sense is you urgently need some friends - I'd suggest finding one of the forums here and be as simple as that "I'd like to make some friends".  (Just be careful of weirdos and predators - but my sense is 9.5/10 of the people are pretty solid).

 

Sorry again if this is garbage advice - you seem like a clever person, just a bit lost and bereft - sometimes we need an outside perspective to shake our way of thinking up a little - I'm just trying to offer that.

 

Best of luck.  I hope things get better for you - not just prognostically/health, but in general.

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