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Ailidh
Posts: 52
Joined: Aug 2013

Since I posted my first post about how low I was feeling, some things have improved. The depression/low mood has lifted quite a lot - I haven't felt the "being poured down a drain" feeling for several days now. I still have some anxiety, and have to psych myself up to doing things that were second nature to me before the cancer. This bugs me but if that's my new normal, so be it. Meeting the challenges has helped my mood, I'm sure.

However, my insomnia is hurtling downhill - only 2 hours last night, the highest I can manage is 6.5, the new normal is between 5 and 6. I find it hard to cope with so little sleep on top of the ongoing fatigue. Not only is it hard to function, and I daren't drive this morning on so little sleep, I'm worried it might set the depression off again.

Baby steps, I guess; but oh, for a decent night's sleep......

 

Hugs to all.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1454
Joined: May 2012

Ailidh,

Any improvements are improvements. I hope you continue on this recovering path.

"The journey of a thousand li starts from where one stands."  --  from paragraph #64 of The Lao Tzu .

This, of course, is the source of the English paraphrase, "A journey of a thousand miles begins with a single step."

max

 

NANCYL1
Posts: 282
Joined: Jun 2012

 

Ailidth:

Some progress for you.  Good.

I have a few medications that tend to make me sleepy during the day. Annoying.  I perk up at night (have always been a night owl, anyway) and take advantage of this to catch up on my reading.  

For wakefulness: 

1.  Sometimes I read myself to sleep.

2.  I am located in an apartment near a parking lot.  Sometimes use a White Noise Machine.

3.  Peaceful music.

Fatigue and depression:  Caffeine.  Temporarily lifts the spirits and  energizes.  Too much: jittery.

I have heard that too much sleep (not your problem) can cause depression.

 

Nancy,

with a mixed bag of "thoughts."

 

Rocquie's picture
Rocquie
Posts: 607
Joined: Mar 2013

I am happy to hear that you are beginning to feel better. I know what you mean about the anxiety of getting back to the things that were always second nature. For the longest time, I felt so vulnerable--physically weak from disease and its treatment, people saying boorish things to me, my looks challenges (weight loss, dark circles under eyes, baldness), and germs!

As you are discovering, each time we reach deep to find the courage to face these challenges, our confidence is bolstered. Also, as you start feeling better physically, things become less of a challenge. You are really not that far out of treatment, so don't be too impatient with yourself.

About sleep, were you a good sleeper before? I was just wondering if this is something new.

(((Hugs)))

Rocquie

 

Ailidh
Posts: 52
Joined: Aug 2013

Thanks for the replies.

On the sleeping, yes, this is completely new. I have always been a great sleeper - straight to sleep, rising and falling throughout the night but always getting straight back off again. I could sleep 6 hours one night, have a nap in the afternoon, then sleep 8 hours the next night. Rarely a problem. I'm made very anxious by the state of my sleep at the moment - no more than 2-3 hours last night, and I feel very tearful.....

girliefighter's picture
girliefighter
Posts: 225
Joined: Mar 2013

I think I can relate to what you are saying, I am lucky to get 3 hours of sleep a night and I just can't seem to function on it....I could sleep for 12 hours prior to my treatments/illness, for whatever reason my body won't relax for that long now. I too get depressed and feel like I just might not be strong enough some days, but I will remind you that in fact you ARE!!! If you need to cry to release some of that tension then do it, I can recommend a massage<----nothing feels better when you are depressed than someone else spending an hour on JUST YOU, it's all about babying your body and soul!! Plus you might get one of those drooling on yourself types of sleep, those are the best. I am wondering if you have someone that you can talk with, share your true feelings and concerns<---only reason I ask is because I do not and that makes me feel alone and depressed sometimes. I take citalopram to even out my mood for now, but if you really wanna have a good time get some ATIVAN.

I pray that you can relax and get some much needed rest, your body needs you to rest up for the fight

XXXOOO

Carie

Ailidh
Posts: 52
Joined: Aug 2013

Thanks, Carie.

Well, I got 7 hours' sleep last night, although it was full of weird dreams about me sending the train down the wrong track (no, I don't kow either) and feeling like I was shirking my responsibilities, and I still feel kind of grumpy this morning. Still, at least it proves I still have the capacity for sleep.Hope you had a good night.

Ailidh
Posts: 52
Joined: Aug 2013

Then I got 7.5 hours of the sweetest sleep since I don't know when. It was like before Cancer sleep, although actually, I slept pretty well most of the time during treatment, it's only during what I'm now referring to as "the current phase of my recuperation" that it's been so poor. Then last night back to 5, heyho. Still, I've proved that good sleep is not completely lost to me.

I've downgraded the depression to low mood.

I've downgraded the insomnia to sleeping issues some nights.

The anxiety, I can't find another word for but I've identified it as caused by the overwhelming sense of vulnerability that cancer brings. I say this because "all" I suffer from are the physical symptoms of anxiety - rolling adrenaline, wobbly legs, dizzy head (not all, not all the time) - I'm not mentally worrying about anything. Some of the vulnerabilities: "knowing" at my first consultant's appointment that I was going to die, and that knowledge being "confirmed" by the consultant's first words ("Do you have family?" - I thought she was telling me to summon my next of kin); being hospitalized in Cycle 2, despite being so careful to avoid infection/wrong foods etc (I know nutropenia is no-one's fault, that's kind of the point - you can try so hard but the body is vulnerable); getting a letter the other day to go for a flu jab, because now I'm in a vulnerable category - it's not my age, it's the lymphoma, I am "officially" vulnerable.

OK, so I've identified it, all I have to do now is work out how to deal with it/live with it. I guess it's progress.

Hugs to all.

NANCYL1
Posts: 282
Joined: Jun 2012

Ailidth:

I know what you mean by the feeling of vulnerability and anxiety.  I do have a sedative but of course cannot use that too frequently.   Never thought much about my mortality until heart surgery and then to top it all off:  cancer.   The oncologist, about a month ago, scared me.  He was concerned about a couple of things and sent me for a PT-Scan.  Before my husband and I left his office that day, he said that he was trying to keep the stress level down and then added that he wanted to give me more years.  Yikes!  I was loaded with anxiety until I returned a week later and found that the Pt-Scan was just fine.

I am learning to live with all of this, sort of, but we do not have a family support group nearby, which makes it much more difficult.

Glad to hear that you are making some progress.

Nancy

GKH
Posts: 400
Joined: Jul 2012

Will Rogers once said "we are all dying, some of us just don't know it yet"(SIC). His meaning was that everyone, regardless of age and health will die. So far as we know its inevitable. The big difference for people with a serious illness like cancer is that we are reminded daily that we are mortal. Just like the supposedly young healthy guy down the street, we don't know when we will die, but we know we are mortal. Once you accept mortality it certainly makes you treasure life more. My older relative, after being struck with polio at age 5,  has had cancer with remissions, surgeries and treatments for 38 years. She is very much handicapped and in ill health but I guarantee she uses every day to its fullest. She has raised three children, got her CPA and run a successful business on crutches and now in a wheelchair. I asked her how she does it. Her reply still sends chills up my spine. She said "I looked death in the eye and spit in his face. I will deal with death when he comes but this life is mine, and I'm going to use it the way I want."

I hope this is not too frank but I feel that a positive outlook and drive to live and flourish is the best drug. And we need to realize that everyone alive is really in the same boat. That keeps us from feeling sorry for ourselves.

Ailidh
Posts: 52
Joined: Aug 2013

I admire your relative and I want to take that approach but at the moment I can't. I woke very low indeed this morning - not nearly enough sleep either - I am angry and frustrated with myself that I am still so far from normal. It might seem like wallowing to others but it feels like hell to me. I'm not struggling to cope with cancer, I'm struggling to get out of the depressive state it threw me into, and today feels like a long way down.

girliefighter's picture
girliefighter
Posts: 225
Joined: Mar 2013

It is ok to feel down, but don't let it control you....not feeling normal is the NEW NORMAL, once you accept that you will start to LOVE YOURSELF the way you need to. SCARS< HAIRLOSS<WEIGHT GAIN<DEPRESSION, these are all things that are daily proof that you fought back and WON!!!  I was preparing to go to a funeral this past saturday for my father's cousin who had just passed from leukemia and found myselff getting ffrustrated because none of my clothes fit my new chubby body and my hair wouldn't curl on one side and I had to stop and remind yself that atleast I had hair and atleast I was able to attend a funeral in the upright position. Life is about perspective and how you look at things or allow yourself to see things.....stand back and take a long objective look at yourself, while not being perfect as nobody is, you in fact are alive and able to cherish the things that mean the most to you. LOVE YOURSELF where you are now and know that better days will soon come.

XXXOOO

Carie

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Hi Ailid,

 

IDK if this will help you but it helped me so I'll throw it out there.  A brief background:  Hodgkins Lymphoma 1989, 1994, Invasive Breast Cancer 2007 from Radiation treatments.  Numerous long term effects from treatments, hypothyroidism, carotid artery stenosis, MVR among other cardiac issue, pulmonary fibrosis, radiation fibrosis syndrome, etc etc. 

So managing all these LT effects and worrying about the BC returning, raising 2 teenagers, working, etc  I would feel somewhat anxious if I wasn't feeling well and waiting for a diagnosis.  I was beating myself up that I am in control of my thoughts, I thought I'm not obsessing, I'm going on with all my daily duties so why do I feel anxious?  When a doctor put it in perspective it helped immensly.  He said we all have an emotional immunity as well as a physical immunity.  It was that simple.  If something was effecting my emotional immunity it is going to have an effect that I could not contriol.  But I could take care of my emotional immunity as I would my physical immunity.

I guess I just needed a logical way of looking at it therefore I stopped beating myself up that I couldn't always control my mind.

All  the best!

Cathy

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1454
Joined: May 2012

Glad to see some submissions from you again, Cathy. Your long-term-care info is always the best -- a subject too few of us know anything about.  Or DO enough about .

max

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Thanks, Max. You are too kind! Missed you guys. Had a good summer and was busy getting our daughter ready to study abroad this semester.  have some doctors appt's coming up.  Will be checking in from time to time. Take care all!!

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1454
Joined: May 2012

Cathyp,

What country will she be in ?

I was offered a year at the University of Versailles (outside Paris) in grad school, to teach ESL, but declined.  German was the only foreign language I had any real familiarity with, and adding a crash program in French seemed just too much to take on.

max

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Hi Max,

She is in Madrid! 

Wow, Paris was a possibility for you?  Interesting to think what would our lives would be like taking the other path at the fork in the road.  But alas, we can't look back just forge ahead!

Cathy

Ailidh
Posts: 52
Joined: Aug 2013

It's definitely true that realizing we can't always control what floods our mind takes away some of the guilt that goes with it all. Knowing that other people have coped with far worse far better adds to the guilt, and maintaining a positive attitude while in the grip of the dark swamp is just as impossible as running a marathon with a broken leg. I have, however, maintained a "clinging on for dear life" attitude, which is often helped by being able to write out how I feel.

I've been rewarded by a lightbulb moment, when I remembered that the anxiolytic med the doctor gave me for hypertension does have disturbed sleep and nightmares as a side effect. I can't tell you how much better that made me feel! To be someone whose meds give them some sleep issues feels so much better than being an insomniac! So I'm a lot more relaxed when I go to bed, and am managing a steady +/-6. So today is a very good day. As soon as I can get to see my GP (she's on holiday) I'll speak to her about reducing the hypertension meds, hopefully my sleep will improve even more.

 

Sleep-inducing hugs to all.....

girliefighter's picture
girliefighter
Posts: 225
Joined: Mar 2013

Just checking in to see if the lowering the meds has resolved some of these sleep issues?? I know that lack of sleep can cause depression and make one feel as though nothing will ever change. I am hoping you are able to get some rest or atleast feel rested if it isn't a huge amount of sleeping.

XXXOOO

Carie

Ailidh
Posts: 52
Joined: Aug 2013

It's good to be able to look back at posts and see that yes, I Was feeling better and yes, I Was able to sleep more - as neither of them are true at the moment. 4 hours sleep last night - it's decreasing day on day despite being exhausted - and a mood that dissolves in tears. I really am trying to feel better but it ain't working. Heyho.

Ailidh
Posts: 52
Joined: Aug 2013

girlie, thanks for asking, I appreciate it. I finally got to see my doctor of choice on Friday. She's not minded to take me off the propranolol because it's helped a lot with the anxiety. Another doctor had prescribed 10mg amitriptylene for pain in my neck but I wasn't keen, as the pain's not that severe, and I don't want to take anything that will make me feel hungover in the morning. Surprisingly, my doctor thought it a good idea, says poly-pharmacy is a good idea for me at present. Amitriptylene at this level is good for sleep, apparently.

However, I've had 3 straight nights of 7 hours' sleep, so I haven't started the amit. yet.

Oh the bliss of sleeping well! but my mood/anxiety means I'm still worried every day that I won't be able to repeat it tonight.

Thanks again.

Ailidh
Posts: 52
Joined: Aug 2013

Aw, I thought someone had answered me.......

Rocquie's picture
Rocquie
Posts: 607
Joined: Mar 2013

Yes, I thought someone had written to you too. So I thought I would; I have been wondering about you anyway.

So, how are you doing? Feeling any better? Stronger? Sleeping? I suppose we all have those same after effects of our disease and treatment. And they are the hardest part--because we have to do it alone. I really do wonder if I will ever go through a day without thinking of some aspect of my lymphoma and the journey it took me on. 

Some things make me laugh. Like the time I was using a walker and needed to use the restroom while in a restaurant. Someone was in the larger handicapped stall, and since I didn't think I could wait, I went on into one of the smaller booths. Trying to get in there, get the door closed, then get the walker turned around, was quite an ordeal. I was banging the walker around and hitting the metal partitions, making the most outlandish noise. It sounded like I was tearing the place down. Just thinking about that makes me burst into laughter. (For an added visual, I was also pale as a sheet and wearing an awful wig).

Other times, I am moved to tears. Like remembering the day, when I was in the hospital, so sick, and my doctor hugged me and cried with me. 

I hope you are doing well, Ailidh. I think of you often.

Love,

Rocquie

 

 

 

Ailidh
Posts: 52
Joined: Aug 2013

Thankyou, Rocquie, for writing and for thinking about me. I'm still up and down but I suppose around a narrower spread: I haven't been Dreadfully low for a while now but I don't see to get very high either.

For some neck pain the doctor prescribed Amitriptyline 10mg. I wasn't sure, knowing that it's and anti-depressant in higher doses, but I started it on Saturday and have had 6.5+ hours sleep each night. The daytime grogginess is wearing off. I'm very gradually beginning to feel a bit more relaxed about sleeping, although fear of sleeplessness is still a big issue, which annoys me. The doctors keep encouraging me to realize that my recovery is a process, not an instant fix; I try to take that on board, it stops me feeling guilty....

I saw the Consultant for my 3 month check yesterday. She felt all my nodes, confirmed I'm fine.  Does it take a while to believe them? :D

Anyway, how are you going on?

Ailidh
Posts: 52
Joined: Aug 2013

A week on and the tiny dose of Amitriptyline is doing well for me. I haven't dropped below 6.5 hours' sleep since I started, sometimes I get all of that in one lump too! Gradually, I'm being able to trust that I'll sleep when I go to bed. My mood is fair; I'm still tired and sleepy most days, though not nearly as bad; the anxiety comes and goes but is usually about actual things, rather than being attacked by random anxiety surges. I just need to learn to trust this new normal! Still a fair ways to go but disposed to believe that I'm getting there.

 

Hope all are doing OK.

NANCYL1
Posts: 282
Joined: Jun 2012

Hello Ailidh:

Glad to hear that the Amitriptyline is helping.

I may be repeating myself, but before taking the Amitriptyline, were you sleeping alot during the day?  If you were, that could very well have cut into sleep at night.

Nancy

Ailidh
Posts: 52
Joined: Aug 2013

Hi Nancy, thanks for replying.

No, I don't nap during the day, and haven't since the emotional episode started.

My sleep's still quite good at night but my mood has been up and down. I discovered that Ibuprofen can cause anxiety and depression (the doc prescribed it for the bad shoulder, as the pain of it can wake me from the deepest sleep) so I've cut that out as of yesterday, to see if it helps. It's all trial and error, this recuperation game, isn't it?

 

Hope you are well.

NANCYL1
Posts: 282
Joined: Jun 2012

Ailidh:

You are right, there is a lot of trial and error, particularly with pills.  Never heard that Ibuprofen can cause anxiety and depression.  Tylenol seems to be OK for me:  Acetaminophen.

Nancy

 

 

Ailidh
Posts: 52
Joined: Aug 2013

Things had been quite good for a while but I was thrown last week by my Mum (93) being unexpectedly hospitalized for a couple of days. She's now home and fine. Now the dog (18) has been ill and I took him to the vet today, fearing it was Time. vet has given him medication but wants him back tomorrow to Decide. A friend came today but I'll be alone tomorrow.

I've been crying all day today, terrified I'll sink into the Pit again. Then, when I was praying this Evening I suddenly shouted at God, "First you'll take the dog, then you'll take Mum, then I'll be all alone" and I discovered I was crying for the life I haven't had - it wasn't a conscious decision to be single it just happened. Curiously, I feel a little better now I know what the matter is but if anyone can spare a hug, I'd be grateful.....

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Here's a great big HUG for you!  It's free - almost.  Please share it with somone else :).

Hang in there!

Jim

Ailidh
Posts: 52
Joined: Aug 2013

Thanks for the hug, Jim!

 

 

It seems this is a big and long low. I'm trying but no amount of positivity can cure a depression, in my experience. Still keeping up my routines but hanging on like grim death.....

NANCYL1
Posts: 282
Joined: Jun 2012

AILIDH:

 

Another Hug is on its way across the Pond.

 

Did you catch it?

 

Nancy

Cerato
Posts: 18
Joined: Nov 2013

(((((((((Ailidh))))))))

Hugs galore for you!  

I think that I pretty much get where you're at. If I'm right about that, then i've felt at least some of what you're feeling. It is indescribably painful.  

The thing is that you are going to shift from this horrific feeling state, Ailidh.  Right now you are focused on the worst possible case scenarios  - perhaps by way of catastrophic thinking(?).    What you are afraid will happen, may or may not happen, but from my experience catastrophic thinking doesn't change the situation, it only drains my strength - both mental and physical - and makes me less able to deal with whatever it is that does in fact happen, which is often not this thing(s) I was worried about.

Don't get me wrong - I can have some horrifically angsty times, but I am learning that I can have at least a little control over my thoughts.  And thoughts lead to actions (I do something to comfort myself), and that leads to a change in my feeling state -- if only for a bit, but it's something.  

I'm sure that you already know this, ((((((Ailidh))))), but I thought that I would slip it in here as a reminder.  What I'd really like you to know is that I am thinking of you with warmth and a tender heart.  

So here is another big ((((((hug))))).  I'm so glad that you posted. 

Take extra good care of yourself!

Cerato

 

Ailidh
Posts: 52
Joined: Aug 2013

Thankyou for the hugs! It means a lot. There have been some forums where I've felt chastized for not being positive enough and you think, I thought I was allowed to ask for support? So I really do appreciate the empathy and sympathy and hugs.

 

Friday and Saturday were pretty dire. I couldn't work Sunday, had to ask my senior colleague to lead the service but just standing up for myself and saying No did help a bit. Monday was a bit better and Tuesday was extremely good. Today, so far, is not wonderful but not hideous either. I think I'm gradually crawling back up out of this trough.

 

I'm planning some time to work on some strategies to try and keep my mood up. I find that anything that involves taking some kind of control tends to help, if only a little. I've also decided to tell my boss - visiting me this afternoon - that I won't be taking on any more work, in fact, cutting down just a little, until the new year. To be fair, I am incredibly fortunate to be still being fully paid when I'm only doing 85% of a job but he always makes me feel pressurized. I'll practise taking control of that interview too.

Thankyou again, and I wish you all well and reciprocal {{{{{hug}}}}}.

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