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Like Humpty-Dumpty, I can't believe I'll ever be put together again..... :(

Ailidh
Posts: 52
Joined: Aug 2013

Hello from a new and U.K. member who needs help.....

I was diagnosed in late March with NHL, which presented in my tonsillar bed. It was a total surprise, because a) I had my tonsils out 50 years ago and b) I wasn't aware of any symptoms beyond a bit of a virus (or was it?....)

I started chemo in mid April. I only had 3 cycles. I was hospitalized in Cycle 2 with a neutropenic episode. I began to feel a bit "odd" then but it went away in the 3rd Cycle, and was OK for most of the 15 radiotherapy sessions.

However, a few days before the radio ended I had a melt-down at the hospital, was in floods of tears, and was sent home with a strip of Diazepan and the phone number for the Samaritans.

They gave me Zopiclone sleeping pills. They knocked me out but made me feel dreadful the next day, and magnified my anxiety.

They changed the pills to Temazepam but they made me very tired the next day, plus my anxiety broke through them 2 nights out of 3.

After a week of me being so weird, my partner of a year left, saying he couldn't cope but that he'd keep in touch to make sure I was ok. 4 texts in 6 weeks....what a pal.

I see the oncology psychologist once a week for talking therapy.

Currently, I'm not on any sleeping pills, and generally manage 6-7 hours, although I remain anxious every night in case I don't.

I'm not on anti-depressants: neither the psychologist nor my GP (family doctor) think they'd not be in my best interest: I don't seem to react well to meds; they say I'm not clinically depressed. I don't know what I am then but many, many days I feel very, very low - and then there are days when I feel like I'm being poured down a black pit, while being crushed by a big, black rock.

I've always had only a very few friends, and that's always been fine but now I've had to beg/ask colleagues to come and visit me on a rota basis (the hospital have encouraged me to make a weekly timetable to try and make sure I have things to do all day, so that I have less time to think; I've found that the only thing that really distracts me is company).

For 4 weeks I couldn't drive, due to lack of sleep and the meds. I'm driving short distances now.

I'm off meds, and sleeping (though fearful I won't).

I don't have the massive adrenaline surges of anxiety that I had for 4-5 weeks. I don't know if that's a general improvement, or due to Propranolol 80mg slow release that the GP switched my hypertension med to.

I'm on a very slow phased return to work but very far off full time.

I'm trying to build up my exercise - now on 2 X 10 minute walks a day. I know it's not a lot but I started at 1 X 3 minutes.

I am in remission, in fact the whole cancer was taken by the biopsy. I found that out at the start of my 2nd chemo Cycle.

I suppose, when I read the above, I can see an improvement but it is So Slow! Some part of every day, I feel dreadful. Some days I feel dreadful throughout. About 2 weeks ago I started being able to cry again. Yesterday the ex came round to collect something he'd left. I was out but cried in 'our' bedroom for a very long time afterwards. I've had about 6 patches of crying today too, and feel very low and very sad.

I do apologize for the long and dreary post but I just feel so awful. I cannot imagine ever feeling 'normal' again. I know what people say about life after cancer being a different normal to before it but I just can't imagine anything beyond endless days of feeling grim.

Any kind words would be much appreciated.

Rocquie's picture
Rocquie
Posts: 510
Joined: Mar 2013

I am so sorry to hear that you feel so sad and alone. Healing from a serious illness, like we have done, is very emotional as well as physical, as you know. I am very, very sorry that your partner was unable (or unwilling) to stand by you and support you. That alone, is enough to make anyone, even a perfectly well and healthy person feel sad/angry/hurt, etc.

I know the frustration of slowly healing. Sometimes it can feel like taking one step toward progress, then suddenly sliding down a steep slope.

I hope you will join us, often, at this site. There are so many wonderful people here, who really do understand exactly what you are going through because we/they have been through it or are going through it too. We may not be able to sit down with you and physically drink a cup of tea with you, or be able to physically hug you. But we are real people and I have found that cyber hugs, smiles, tears, and laughs can be very beneficial.

Come often. You will find that you have something to say to help someone else's struggle and that will help you too. And it is most definitely something to keep you busy.

(((Hugs))) and friendship,

Rocquie

 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1182
Joined: May 2012

Ailidh,

I took the anti-anxiety medication Lozarapam during chemo.

It did not sedate me out, but I was most assuridly "calm."   It is used pretty commonly for cancer patients in the US.  I do/did have a lifelong issue with clinical depression (diagnosed with severe clinical depression at the unusually-young age of 14), but oddly enough, was not really depressed during treatment (six months of chemo, but no radiation at all).  You mentioned a lot of sleep.   I slept about 17-18 hours a day the whole time I was on chemo, but the disease was so bad, I was unable to stay awake long before diagnosis.   I woke up long enough to use the bathroom, and would watch a gardening show on TV at night, and then pass out again until the next day.

It is great that you are seeing someone at the oncology practice.  I suspect that the severity of your situation demands medication, at least short-term.  Be thankful that your cancer is gone  !

max

http://en.wikipedia.org/wiki/Lorazepam

 

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onlytoday's picture
onlytoday
Posts: 595
Joined: Jun 2010

Ailidh,

If there is one thing I've learned with this dreadful disease it's that everyone's story is different and everyone reacts differently to their dx,tx and the aftermath even if they are in Remission.  So there is no normal reaction or abnormal reaction.  I am very glad you are talking with someone about your feelings.  If the professionals feel that you are on the correct medication and that coupled with talk therapy is enough then I guess you just need time to work it's magic.  As you talk it out and as you have more time to digest what you have just endured you will eventually figure out how to live with your feelings.  This stuff is HARD!  Just remember to be kind to yourself.  You are in Remission!! That is great news!   Stay with us here- we're a very varied group- all great people with big hearts.  Sorry you need to be here but glad you found us!

Bless you,

Donna

illead's picture
illead
Posts: 554
Joined: Aug 2012

We too want to be of some support.  As you can see, this group is very supportive and comforting.  As was already stated, cancer is a monster and we all react differently.  Some has to do with our psyche I'm sure.  Just the fact that you inferred you are not really a people person but now need people plus that your partner left says volumnes I think. Please use us as your new friends and support system.  We will be here every step of the way.  Many of us have been the deer in the headlights and now we are the ones helping others.  It is a very rewarding thing to see and maybe you will get there.  But until you do, and it's perfectly okay if you don't, just take heart that you can come here anytime and we will be here.  Look for some (even if it is minute) improvement each day and dwell on that and be thankful, even share with us if you would like.  We look forward to having you join us here.  Thinking of you. Bill & Becky

Ailidh
Posts: 52
Joined: Aug 2013

Thankyou for your kind replies.

I wish I could say today is better but it's not. I feel like jumping off the bottom rung into the Pit. I don't know what to do with myself. I feel low and sad and dreadful.....

jimwins's picture
jimwins
Posts: 2071
Joined: Aug 2011

Welcome Ailidh.  I'm sorry you have to be here but you will find wonderful folks on this site.  Please understand you are not alone here and the grief you are going through is normal.  You have experienced a lot of loss - your life as it was before cancer and the possible loss of your partner.  The expression of "new normal" is used often here.  You will find your new normal and I think things will get better although it may be slower than you would like :).  Our lives are never going to be the same after what we've been through with cancer but in many ways it can be better.  I know for me, a lot of the BS and what I thought was "important" before my journey just got flushed down the toilet.  My priorities have changed.  I'm a better, stronger person and although I don't have it all figured out (do we ever?) and some days I feel like I'm just "coasting", I don't beat myself up about it.  I am taking control of my life in a new way from before and it is a work in progress (as we always are). 

I know this is difficult right now but I also know you will work through it and find a new you on the other side.  You have to process everything that has happened and it's okay to be perfectly human.  I'm so happy you are in remission!  As some suggestions, maybe change up your routine a little - do something different/fun and give yourself a vacation from the "grimmace".  Be good to yourself - you just won a major battle and celebratioin is deserved!  It's okay to cry, be sad, fight depression and wallow in the mud for awhile - all very normal things until you find your new wings.  Eventually, you'll turn that mud pit into a garden :).

You have friends here.  I'd make you "bangers and mash" but I don't know what "bangers" are - sausages? ;).  Since I'm on the food topic and regarding "Humpty Dumpty" - I suppose he could become a good quiche or omelette :).  I think I'm hungry so I better close for now and put something in my belly :).

Big hugs from across the digial pond,

Jim

 

 

Ailidh
Posts: 52
Joined: Aug 2013

Thankyou. I Have been thinking about what my new normal will be like - I'm just hoping it's not like this. My mood hasn't improved all day, I'm very scared.

illead's picture
illead
Posts: 554
Joined: Aug 2012

Just want you to know I'm thinking of you.  Hope you go to the title page and read John's entry under "thank goodness", he is Cobra666, maybe it will give you a chuckle.  Becky

NANCYL1
Posts: 256
Joined: Jun 2012

Hello Ailidh:

I am sorry to hear that you are having so much emotional difficulty, post NHL and losing your partner.  It is very understandable that you are so upset.

Good that you are seeing a psychologist.  You say that meds do not agree with you.  I have the same problem.  I go to a psychologist also.    Have a periodic short visit with a psychiatrist who prescribes a sedative and an antidepressant.  I have had difficulty with antidepressants and have found that the only way for me to tolerate one is to do it gradually by cutting the pills, starting with a quarter of a pill, and working up to an entire pill.  I am speaking of a 10 mg. Lexapro.  They make me jittery if I do not gradually get used to them.   Too many sedatives can make you sleepy and can have a depressing effect.  So, it is all a matter of balance. Someone who works with those kind of pills is needed.

My husband and I have become quite isolated.  I am like you: a few friends in the past were fine.  Now, I am isolated and this is not good.  It appears that you and I need conversation and a few laughsSmile.

Good for depression:

Exercise.  In my case I walk.  Used to go to the gym.

A psychiatrist a couple of years ago recommended to me a sun lamp for depression. ( (not a lamp for a tan.Cool) .  you will need to google  for this.  But also check with your doctor re the lamp. 

Self-hypnosis.

Breathing exercises.

And, of course, emotional support and folks to speak to.

I have a computer that is driving me nuts.  The keys are very sensitive and this post just shrank down and the print is very tiny. Surprised  

Come back to the board and COMMUNICATE.  I think it just might help you.

Nancy

P.S. Here is a breathing exercise to hopefully relax you.

Breath in to the count of 4.  Hold breath for the count of 4.  Breath out through mouth to the count of 4.  Hold breath for the count of 4.    And of course repeat.  Try to push thoughts out of your mind.  Think of something upbeat, a beautiful beach, etc.

NC

 

Ailidh
Posts: 52
Joined: Aug 2013

Hi Nancy, Yes, maybe we should chat! That would be good.

 

It is a new day here in England. I only had about 3 hours' sleep last night. I could get off to sleep not to badly but couldn't stay asleep. I was cosy and comfy but by morning I was sobbing and crying.

The sense of abandonment by my ex is really starting to come home to me, in a way that didn't hit me when he first left - at the time I was too strung out and anxious to care much beyond being kind of grateful that I wouldn't have to cope with him not coping with me any more. I think the 3 biggies for me have been:

1. First consultant's appointment. I knew the dx but didn't know any more about prognosis etc. I stood in the waiting room (with ex) and knew that there was as much likelihood that she'd tell me I was going to die as be cured. I had a clear picture of standing on the edge of the abyss. When I went in, the first thing she asked was 'Do you have family?'. She meant, Did I have support but it sounded like 'Call your next of kin' to me. I find it hard to get past the shock of that moment when, in my mind, my death was confirmed.

 

2. I did everything right in terms of chemo - didn't go to germy places, ate the right food etc but still ended up in hospital in Cycle 2 with a neutropenic episode. I've just been thinking about this this morning - it doesn't matter how 'right' we do things, our bodies are So fragile, they can be damaged/taken from us in an instant.

3. Him leaving. Over the 3 issues I feel abandoned and fragile and alone. I also worry that my mood is so low it will damage others. I don't know how but I just feel that.

 

I do walk for exercise, although I can't get too far at the moment.

I will try and breathe and visualize something positive - but it feels very hard at the moment.

 

Keep in touch, let me know how you're going on.

Ailidh
Posts: 52
Joined: Aug 2013

Up and down, up and down.

Wednesday began badly but got up to not bad. Thursday was the best day I've had since this episode began. Friday was not good. Yesterday should have been OK, I was out a lot of the day with a dear friend, but it had an undercurrent of discomfort that I couldn't put my finger on.

This morning? Oh, I don't know, a bit tearful.

The Psychologist still says no to meds, and, as the GP agrees, I just have to hope that they're right, and plod on.

GKH
Posts: 320
Joined: Jul 2012

All our lives we are taught to avoid anger. However anger can be very therapeuic. I am not speaking of violence, just anger. Don't settle for being the victim. Don't be ashamed of getting mad. I think your partner, at the very least, needs to be given a good tongue thrashing. He's a sorry excuse for a human being. Direct your confusion at him.That will help you and he certainly deserves it. I know from experience that hating your enemy keeps you from hating yourself. It can be a good thing when you are in such a predicament, not of your own making. Don't blame yourself.

GKH
Posts: 320
Joined: Jul 2012

The "enemy" I was referring to is the cancer. Kick it's a$$!

Ailidh
Posts: 52
Joined: Aug 2013

I'm working through anger and tears! More tears than anything at the moment but the psychologist assures me that's ok. As to the former partner, yes, he is unworthy of respect; the leaving was bad enough but the failure to keep in touch with someone in the state I was/am in is despicable. At the moment, even if I did see him, which I don't, I don't have the strength to tear strips off him yet, I think it would send me over the edge.

 

Yesterday wasn't too bad, a bit up and down. I got very anxious by bedtime, which meant I didn't sleep wonderfully well, although far better than in the days of my insomnia. The reason I'm anxious? My dear mother, 93 next week, is coming to visit me from her nursing home an hour away. I feel such a fool and a wimp that she's having to make so much effort.....

Ailidh
Posts: 52
Joined: Aug 2013

Still, Mum's visit went well, although it was only short. She was relaxed, because a Carer had brought her (she tactfully vanished into town), so she was supported in her journey. I became relaxed, even nearly fell asleep, which is something I've been too stressed to do during the day for 7 weeks! because, no matter how old I am, it was my Mum talking, and if Mum's in charge, nothing can go wrong. It was good.

NANCYL1
Posts: 256
Joined: Jun 2012

Hello Ailidh:

I would react, as you have, to a partner who behaved in that manner.  It is absolutely outrageous.

If my mother were still alive, I know that, if she could do it, she would arrive on my doorstep to watch over her "little girl."  Once a mother, always a mother. 

Tears?  I think tears make us feel somewhat better, no?

Life delivers such blows sometimes.   Speaking of mothers,  I remember my mother saying, "everythig flattens out."

Keep in touch with us

Nancy

 

 

 

NANCYL1
Posts: 256
Joined: Jun 2012

Adilith:

Saw your post after I posted  Glad you had a good visit.

Nancy

illead's picture
illead
Posts: 554
Joined: Aug 2012

Hi again Ailidh,

     I see you have been posting encouragement to others.  That is a sure sign of making giant strides in improvement.  It really makes me happy to see that.  When you can help others, it helps you to know how much you are needed and appreciated.  I know you will continue to progress, good for you.  Becky

Joemory21's picture
Joemory21
Posts: 40
Joined: Feb 2013

Hope you have some more good days soon. 

Jonathan

Ailidh
Posts: 52
Joined: Aug 2013

Thankyou all for the kind replies.

I had a lightbulb moment yesterday, and decided to design myself a Morning Routine. My Evening Routine has cured my insomnia/fear of insomnia to a very large degree. It's not a rocket science project, just getting up at the alarm, rather than hitting the snooze button; doing a 15 minute Mindfulness exercise before getting up; taking tablets; giving dog his tablets; getting washed and dressed; feeding dog; going for a brisk walk (only 10 minutes but it used to be zero!); breakfast. Like I say, not complex but it was good to have a sense of taking control. Although today hasn't been exciting, and I've had the odd dismal sensation, I've also had occasional flashes of belief that I could feel better, one day.

Shoopy
Posts: 210
Joined: Jul 2013

Nice work!  Sometimes the smallest, simplist soltuions will solve the biggest problem!

Karl

Ailidh
Posts: 52
Joined: Aug 2013

Still plodding on. I'm pleased with myself that I've stuck with my Morning Routine, even on days when I've felt really poor. It hasn't made every day easy or even pleasant but at least I feel like I'm taking a little control.

On the downside, my sleeping is not good again. I'm tending to get to sleep fairly easily, around 11pm, but waking no later than 04:00 or 04:30, and that's not really enough. I don't nap during the day, so I'm getting very tired. Any tips on staying asleep would be much appreciated! My room is a good temperature and ventilated; the bed is comfortable; it's nice and quiet and dark; I try to moderate the amount I eat and drink in the evenings but still have to get up at least once a night for a bathroom break.

Yesterday started badly, with lots of anxiety and crying but improved. I'm a minister of religion, and had decided that yesterday would be the day I put my robes back on and sat up front with the other leaders. I got very anxious thinking about it but it went well. I then had a colleague back home for lunch, which I made. The rest of the day I felt like a normal human again - but still the sleep went awry. Sigh.

Hugs to all.

NANCYL1
Posts: 256
Joined: Jun 2012

Ailidh:

I picked out one of the great hospitals, Cleveland Clinic.  It came to mind because my brother had heart surgery there and people come from around the world to Cleveland Clinic.  Check out their tips and it appears that you can even chat.

 

http://my.clevelandclinic.org/neurological_institute/sleep-disorders-center/patient-education/hic-tips-for-a-good-nights-sleep.aspx

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