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waiting in limbo


Leslie Z

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I have stage 4 lung cancer. Last year I was hopeful after surgery, chemo, and radiation. I did not expect (I suppose unrealistically) a recurrence. I am now on oral chemo and doing....okay....but feeling very much in limbo. I had to leave my home (I have lived outside the US for 40 years) and am staying with one daughter (I have two). She and her husband have been an amazing support but I know the strain I put on them. I'm in a city where I know no one other than a few family members who are busy. I spend my time on the computer, reading, and going to treatments. I find myself wishing it would end and yet I'm not going to hurry the process. I just feel so in limbo and what's the point?

I was very active before--yoga, hiking, and paddleboarding. Now a 5 minute workout with weights which I've started tires me.

I hate to complain and I did speak to a therapist but, when I tried to make an appointment with him this week, he never answered.

Just waiting......

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Good Evening Lezlie,

Well it is here in Scotland,welcome to LCSC,sorry to hear of your dx.Congratulations on the success of your treatments,I do support your attitude,the cancer is gone for keeps.This Oct sees my 6th year of survivorship following my neo-adjuvant chemo and upper right lobectomy 2008/9.I have since no further treatments other than my 5 years of six monthly check ups,my last was in Feb this year,my Doc said after my check up,there was no evidence of any cancer cells in my body and that he had every confidence to say that I am cured,now go away-I dont expect to see you again,we shook hands and exchanged best wishes to each other.

I would love to stay and chat a little longer,but,I have to open my outdoor lawn bowling club at 6pm,so if I leave now,I will make it on time,looking forward to sharing more posts with you,bye for now.

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Well if you had to move back to the US you sure are in a nice city. I love the Zoo there. The Mission Bay is nice. The weather is pretty even year round. I worked at College Park Hospital when I was there with my husband who was in the Navy.

I am so sorry that your Cancer came back. I have a friend who had a lobe on lung removed for lung cancer and a few years later on a check up they found another tumor on the opposite side. It turned out for her it was a different kind of non small cell , she did have a lobe on that side removed too. So far she is doing well.

Please keep us posted.

Donna G

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Thanks so much for your encouraging replies to my post. I just keep thinking that this is it and I'm not going to feel any better. But I want/need to feel better in order to feel like I'm doing anything more than living day to day with symptoms and side effects.

Friday I had a PET scan and successfully kept away from everyone in the house until the radioactive glucose dissipated. The baby stared at me curiously as I ate across the room and I had to keep steps ahead of her when she tried to approach me. It's an odd situation.

The next day I nearly passed out which was my problem a few weeks ago when I did pass out and cut my chin and broke my jaw which fortunately didn't have to be wired but which is still sensitive. My daughter noticed as did everyone that I was on the verge of passing out and got on my case because it scares her. Yet I don't know when I'm going to pass out so how can I say something or sit to prevent my falling?

So far my passing out incidents have been associated with stomach problems (to be delicate). I'm just wondering if I can feel pretty normal, even if I cannot have my super active life back of strenuous exercise, I want to be able to enjoy food (I don't), to not feel dizzy, to have enough breath to walk further than a couple of blocks.

Yes, I'm in a lovely city and I know no one except for a niece and my daughter. I am hesitant to sign up for classes as I don't have the energy to stamina to do anything. Am I impatient? As all this has just been from the beginning of July.

Thanks for listening to my rant and it is good to hear your encouraging stories.

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Yes, please do "Rant on" as Randy said! We all rant now & then. Sometimes more now than then but it's ALL good! That is a part of why we're here!

I didn't think any west coasters EVER walked MORE than a couple of blocks!! You sound like a New Yorker!! :-) I had lot's of neck and back problems both before and due to my lc so I can't remember the last time I could walk a couple of blocks. I hope you get past this slow down quickly! Please do feel free to post on here as often as you feel like it. We may not all get on daily, or weekly etc., but all of the regulars that I have seen on here do genuinely care and want to know how you are!

Please let us know what you are up to and how things are going!

XoxoX

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I'm afraid I don't understand a lot of the shorthand being used in posts about others' medical history but seem to get the gist of what's what. My oncologist called with results of recent PET scan. I've been feeling so poorly what with unbalanced intestinal problems and dizziness as a result that I expected the worst. Turns out I'm improved from last PET. So it turns out I will stay with oral chemo and doc will work on trying to rein in my symptoms so that I can have some energy and not be dizzy. It is good news and I am cautious as I've been told the oral chemo will stop working at some point. But so far I'm hoping to feel better soon. Hopeful and wondering how I will rearrange my life.

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Good Afternoon Leslie,

I hope today sees some further improvements in your health,also wish your oncologist finds ways to boost your energy levels and eliminates the dizzy spells you have been suffering from.I can appreciate how you are feeling post dx,it took me some time to re-adjust to my dx,however,I did come to terms with it,mainly through the passage of time and the support of friends.

In my own situation,initally,I found getting a good nights sleep a problem,my mind was on continual over drive dreaming up all sorts of negative scenarios,no light at the end of the tunnel sort of things.I did refer myself to my GP who prescribed for me some sleeping pills and anti-depressants.I kinda figured this situation is not about being macho or Braveheart,its a natural reaction to a serious condition,I would have taken anything that would enable me to stabilise my thought patterns.There were some feelings within myself, that taking these pills would become addictive,but I need'nt have worried,they were only a short term fix as it turned out.

I belong to a lung cancer support group,which I have found to be very beneficial,do you have any in your area?,if so,why dont you go along for one of their meetings,you may also find it a worthwhile experience,a chance to meet new friends who share your condition.Incidentally,many of the new lung cancer survivor friends I have met in person and online,are also stage 4,all doing really well,one in particular Sheila I pick up en-route to the LC support group meeting is in her seventh year of survivorship.Sheila lives alone,a real character,I was telling her of my 7 week journey through the USA,seems I impressed her of how friendly the natives were,she then books up for a three centred holiday in the US, Washington DC,New York and Boston,by the way she travelled on her own,not bad for a woman in her seventies.Sheila is having the time of her life,spending a lot of her time travelling about,she dos'nt mind spending the relatives inheritance money,good for her.

Time to go,dogs are ready for their walk around Drumpellier Park,its a lovely day here today,apparently our weather is to take a sudden change tomorrow, low pressure coming in from the north leaving us here feeling colder and wetter it seems,oh well never mind ,make hay when the sun shines,think you will be enjoying lots of sun where you live in California?.

Best Wishes.

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Congrats on the improvements!! And good that you have your doc working on the side effects and issues. Too many people suffer in silence when it does no good.

As far as the abbreviations go, I just went on a quick search but failed :oops: I could have sworn that there was a post somewhere on here that had a dictionary of jargon, but I can't find it. I didn't look too very hard either, so it may be out there somewhere. Hopefully someone else will see this and point us in the right direction. Until then, please ask! Those are the easiest questions for those of us who use them to answer!

In looking at this thread I see only two signatures, and the big one was mine 0_o

NSCLC = non small cell lung cancer

SCLC = small cell lung cancer

NED = no evidence of disease

CT & PET MRI are all diagnostic scans

DH = dear husband

There is a start and Please just ask!

XoxoX

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  • 4 weeks later...

Long time, no write....and I appreciate those who have been answering and supportive to my rants. I'm better these days. Am visiting my other daughter in Central California. There is a view of Morro Rock from their living room....quite dramatic! My doc reduced my dose of the oral chemo from 250 mg/2x day to 200 mg because he said that I was taking a dose for a 250 lb. man (am gaining weight and weigh about 107 lbs). However since the drug is super expensive and I still have a couple of weeks left of the 250's, I'm doing the 200's in the morning and the 250's at night. The nausea has mostly disappeared (can't tell if the drugs are taking care of that or if I've become accustomed to the med) as has the dizziness, although I am still trepidatious when standing after sitting or lying down. And I don't want to drive because I just might be a danger to others. I feel so tentative about life and am awed by the accounts of others who seem to be living their lives as though they are cured. I mentioned to a friend that my good results seen from the PET scan signaled to me a 'stay of execution' and she got after me for not being positive. i thought I was being realistic. So, here I am. Out of my element and home, wondering how to deal with it. Have been thinking about signing up for guitar lessons. Wondering how to get involved if I don't have transportation and how not to be so dependent. Am finding I do have more stamina than before and yet there are days when I feel whipped and need to rest. That happened the other day and somewhere in the afternoon, it was like a switch was thrown and, voila!, I felt good again. What a weird way to be! 

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Glad you felt that "switch thrown" perhaps it is that tweak you had in the dose of chemo. 

Music is good medicine!   Lots of good stuff can come out of a guitar.  Can you drive now?

I wonder if there is a site on line that teaches it?

Thanks for keeping us posted on how things are going. 

Looking to hear how the guitar lessons will turn out too.

 

Donna G

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  • 2 weeks later...

I was reading your original post-its only been a year for you since surgery? People recover at different speeds. I got so depressed when I would read of people going skiing and the such within months of their surgery. I didn't before, and will never do anything that energetic but hearing how much more quickly they bounced back was depressing. It takes time...to come to terms with the disease/mortality, you made a major life change in your move, time for your body to recover and you are still in treatment! Please get out of the house each day for something! Even if you can't join an exercise group of some kind, do something you either like or are curious about, even if it is going to the Library instead of being on the computer in your house. You like yoga...try a beginner class. The thing about yoga is it is at your pace, your capabilities...so do what you can. If I lived close to my treatment facility (an hour away for me) I would go to one of the support groups as someone suggested to you. Please give yourself time to adjust and heal. All the best!

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do what you want to do at your pace... My wife went through Radiation and painted the inside of our small house... well living room and dining room and hallway but still.. when she was on chemo she took Art classes at nearby Community college... She would come home and brag about lugging everything up the hill from the parking lot becasue she did not want to take up a handicap space when she felt good... when not good would use her handicap placard.... Made me so happy to hear those things....

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  • 2 months later...

Have felt good enough that I was not posting here. Now the medication I was taking stopped working (crizotinib) as I was told it would. I've signed on for a clinical trial. Going today for a brain MRI. Makes me want to sing and dance to Scarecrow's song in Wizard of Oz, If I Only had a Brain! La,la, la...anyway working on positivity. one daughter turned me onto Louise Hay. I like her attitude. Might as well smile! 

Good day to all!

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Thanks for the update. 

Good, signing up for a clinical trial is a great idea.

Also , you do know that laughter is really good medicine.!

 

Let us know how the MRI goes.

 

Donna G

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  • 2 weeks later...

I hope to hear great things about your  Clinical Trial.... Your a PIONEER in Lung cancer research and that is a great thing to be!! sadly there are not enough folks diagnosed early enought o b e in these trials so a BIG THANK YOU!!!!! Hope your doing well these days... post up and let us know . even if just to say hi or whatever case may be!!

 

oh and we can be better and cheaper than therapy BTW! and always around or someone is.

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