pain from cancer the physical and moreso emotional pain

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snowflake
Veteran Member


Date Joined Feb 2007
Total Posts : 595
   Posted 1/20/2009 11:10 PM (GMT -7)   
Hi everyone this is my first time in this part of the forum i mainly post in the depression forum because that is what first bought me to Healing well .
For as long as i can remember i have suffered from depression but this latest pain is caused from cancer .
Four years ago i went to the drs with a small sopt on my nose that was pinful and swollen he just said it wasn`t much and he gave me a cream to put on it as his treatment .Well this continued for a couple of years each time it flared up he would try a different cream .So then in desperation i asked for a referral to a skin specialist to see if they could help as this was getting so much worse .
On first meeting with the skin specialist i was told i had a Basal cell cancer and before i left the room a large biopsy had been take if it and was told to ring in a month for the results .
Results confirmed the drs diagnosis but it also confirmed a bad one this one was with many points of origin called multi focal basal cell cancer and i was then referred to a plastic surgeon as i would need more surgery and also skin and cartliage grafting .
After surgery i was shocked to see the extent of the piece taken out but was pleased to hear they had it all .Then at a three monthly check up i was concerned with it and when pointed out to the plastic surgeon who then decided to do further biopsys which confirmed more cancer .
I was referred to an oncologist ( cancer specialist)  who decided rather than to take the end off my nose he would use radiation to treat the cancer .This was 15 doses over three weeks all of these treatments were done almost 1,000km away from my home and family .
As a result of the radiation i had severe ulceration down my nose which i just put up with until the past few months when the pain just got so severe not only in my nose but in my whole face and also included severe headaches .
On one visit to the oncologist a few months ago i mentioned to a relieving oncologist ( as mine was away ) about the pain and crawling sensation in my nose .He referred me to a skin specialist who took a swab of my nose and put me on antibiotics he then said he had no idea what to do so was referring me to the current ENT  surgeon .
This surgeon has burnt the lining of my nose with acid in the hope the ulceration will heal faster but he didn`t tell me this process was as painful as it was going to be .Then two months ago another biopsy was taken from inside my nose this was found to have a different type of cancer than the first one in being a squamous cell cancer .SO now i was referred back to the oncologist again where he told me i would have to have my nose amputated .I just want to stop the pain it`s stuffed my life so much now .
When the oncologist looked into my nose a months ago he could not see the cancer because of the inflamation in my nose so he prescribed a cortisone cream in the bid to settle it down .Last week when i saw him again he was pleased that the cream had worked to a certain extent but now wants to use the same cream for another month before the surgeon takes a series of biopsys from around  the current cancer to see how far it has spread .When the results are back he told me we will discuss the surgery .
With all of this i`m now having nightmares and am waking up not being able to breathe as they have amputated my nose .I sit on the side of my bed suffocating each night and now am at the stage where i only sleep an hour or so even with the help of 50mg of morphing 5mg valium and   10mg stilnox each night .
I wake up vomiting each morning feeling as though i had been drunk the night before .
I just want this all to end one way or another .
Snowflake

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 1/20/2009 11:27 PM (GMT -7)   
Dear Snowflake,
I am so, so sorry you are having to go through all this. It seems you're going to a number of doctors; are they the best you can find in your region? If it was me I would try to get a second opinion from a major cancer treatment center, even if I had to travel a bit.

Increasing numbers of cancer treatment centers are adopting a "whole person" approach to treatment, which I think is how it should be. I would ask if there's a counselor or psychologist who works with cancer patients you could see to help you with all this. I think the nightmares are understandable, and you need a treatment team of doctors and others like a good therapist to help you make decisions, and help you get through this.

Please keep posting. It's late and I don't know how much this is helping, but others will come along who at least can offer support. And if you're feeling at all suicidal, please call the suicide hotline at 1-800-SUICIDE or a local emergency mental health center in your area. Many people survive cancer, but yes, it may require a lot of treatment - and lots of support as you're going through it. Be sure to lean on any family and friends, as well as other resources.

PaLady

AndreaRN
Regular Member


Date Joined Mar 2007
Total Posts : 91
   Posted 1/21/2009 5:35 AM (GMT -7)   
Dear Snowflake,

I am so sorry for your distress. Do you have family....live alone?

After having steroids....prednisone I had the most horrible nightmares. I was alone and would lock myself in the bedroom and sit up all night shaking I was so afraid.

I agree with all PaLady said. I am hoping you can get some help soon to help guide and support you through all that is ahead.

Andrea
Women who behave don't make History!

C3-4 herniation
C4-5 disectomy & fusion (anterior)
C6-7 & C7-8 L laminectomies (posterior) (need R)
Partial removal of supporting Cervical Posterior Ligament
Constant shoulder pain & tightness.intermittent neck pain
bulged discs at C6-7 & C7-8

Chronic Pain with Vicodin 7.5/325 rx

VIEW IMAGE


Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 1/21/2009 6:20 AM (GMT -7)   
Snowflake,
I am so sorry for what you are going through. We are not doctors and most don't have medical training although there are some nurses here so any suggestions we may have are only because we are used to seeing alot of docs for varried problems that cause pain. That being said, there is a tremendous amount of support here for people like you and me as you probably already know by looking at your 454 posts! Please stick around and let us know how you are making out. Maybe if you tell us where you live someone would have some facilities or docs that could help you. God bless you Sister, My prayers are with you!
Your friend,
Pete
55 years old, Surgury, Radical Prostatectomy 8/20/03, PSA 6.6, Gleason 3 + 3 = 6, Adenocarcinoma extent (moderate) Stage & Margin:T2NOMX, No Metastases, Organ Confined, bone scan: Neg. 3 1/2 years of depression after surgery prior to Hypogonadizm DX, Testosterone Theropy (Testim Gel)since 12/06 but switched to a higher dose of (Androgel) 6/08. 55 and still alive and so glad to still be here to see my two sons grow up to be fine young men. They are both serving in the US Navy, one on an aircraft carrier heading for Hong Kong and the other on a Gator Freighter stationed in Norfolk, Va. I am one proud PaPa! 


snowflake
Veteran Member


Date Joined Feb 2007
Total Posts : 595
   Posted 1/22/2009 11:17 PM (GMT -7)   
PaLady the drs i`m am seeing are the best ones for the conditions i have i have to travel a long way just to see them which in it`s self is so tiring especially when i have to travel by myself on some of the trips .the oncologist is the top in his field and all i can do is leave it in their hands hoping they will do the right thing by me .I only wished i had better choice of local drs as this is where i need the support atm when i`m at home .

Andrea the steriods i am currently using are only topical it`s a cream i put on twice a day so it`s not that that is causing the problem.Today i saw a psychologist as i did need to talk to someone as i`m beginning to think this is all driving me nuts ( moreso than usual) .She is thinking that the nightmares stem from the abuse i suffered as a child and especially when i can t breathe through my nose so hopefully with a bit more work with her over a period of time they may subside .
I live with two of our children and my hubby and one of these children causes a lot of stress normally i can cope but just find myself sinking unable to do anything somedays .Hubby has been a lot more supportive ever since i have let him come into the drs consultations with me so he can hear it all for himself straight from the dr instead of just me and it has helped in some ways as not he understands why i am like i am .

Pete i live in Australia in a remote country town where services are really stretched .I`m please to of been able to get into see a psychologist today and she is hoping she can help me with some of this even though she is not into the cancer side of it but to help with the emotional side of things .
I know Healing Well is a great place i usually post in the depression thread there are so many wonderful and caring people in there who support each other when they are needed .
Snowflake

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 1/22/2009 11:52 PM (GMT -7)   
Snowflake,
I'm so glad you started seeing a therapist to help you through this. You're dealing with a lot. I'm also glad your husband is learning and understanding more, and becoming more supportive.

I'm not sure if I can give the website (I don't have any financial connection with it whatsoever) but Belleruth Naparstek, LISW (she's a therapist who started her work years ago with Cleveland Clinic) has a website with wonderful guided imagery CD's for a variety of conditions, and some of the resources for cancer and chemotherapist patients can be obtained at no cost. Her website is www.healthjourneys.com (if this isn't ok, one of the moderators may delete it), and there are links to the places you can obtain the free resources. She also has CD's and MP3 downloads (I don't know how to do those yet!) for chronic pain and sleep, and even Post Traumatic Stress Disorder. I usually put one of her tapes when I go to bed. Just some thoughts.

Wish I could help more, but know I'm sending healing thoughts to Australia.

PaLady

snowflake
Veteran Member


Date Joined Feb 2007
Total Posts : 595
   Posted 1/23/2009 9:13 PM (GMT -7)   
PaLady thank you for the web site i will definately look into it .Yesterday the therapist gave me a cd on mindfulness in the hope that it will help me with the pain and also we did some work with the nightmares she has linked them to my past abuse something i never would of put together .I know it is going to take some time before this workes but she told me the more i listen to it the better it will be for me .
Snowflake

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/23/2009 10:49 PM (GMT -7)   

Snowflake, I am also very glad to hear that you have seen a therapist.  I think she will help you a lot in coping with this horrible situation.  My dear, you have been going through this for 4 years...repeatedly thinking the cancer was gone, only to have another type pop up--all in or on your nose, which is disfiguring.  You must be a very strong person to have made it this far without cracking up.  I had liver cancer, and after diagnosis had to have many tests and scans.  Then the study that would hopefully save my life kept getting delayed.  During that time, I was so afraid that the cancer would spread or get worse before I had a chance to get it treated.  Thank goodness, that was not the case and I had successful treatment followed by surgery.  I went to Mayo, where they take a team approach...which is the sort of thing I think someone was suggesting.  However, you seem to feel you do have good specialists.

I hope that your psychological issues will be resolved, so you can better deal with the physical problems.  Just know that a Higher Power must be watching out for you to bring you this far.

Have faith!


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


Lindaloo
Veteran Member


Date Joined Sep 2006
Total Posts : 1713
   Posted 1/24/2009 6:45 AM (GMT -7)   
I have read your post a couple times and feel deeply saddened by what you have gone through. You are a strong woman and I admire you greatly. My prayers are with you and I will continue to check to see how you are doing.

God bless and gentle hugs,

Lindaloo
Moderator Chronic Pain
 
Believe in yourself.  Be kind to fellow humans and animals.  Take time to smell the flowers and the coffee.
And by all means, when you are down, ask me for help.  I will be there.
 
Linda


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 1/24/2009 2:36 PM (GMT -7)   
Snowflake,
So glad that you got the support of a therapist. Miindfulness can be very helpful, but can be a challenge to practice. I've got some background in all of this so if you have any questions feel free to ask, although you should ask your therapist, too.

Keep posting...i'll continue to send healing thoughts your way.

PaLady

snowflake
Veteran Member


Date Joined Feb 2007
Total Posts : 595
   Posted 1/24/2009 6:01 PM (GMT -7)   
Hep93 when i was in having the radiation it was a team thing there as they had it all down there drs ,psychologists and psycharitist which was great with all there help i made it through the radiation and then breakdown i suffered from everything as a result .I was away from my family for the first time in 28yrs for nine weeks and found it increasingly difficult to cope with the treatment i was having and the problems of being so far away from my home .The resourses are very limited and where i live and a psychologist is only available because one comes out here once a fortnight . I travel 8hrs just to see the oncologist which has been once a month lately .So seeing an oncologist psychologist is not a thing i am able to have out here .
The surgery i have already encountered has made a difference in the way i look at myself one in which i do not like and now to have further surgery is only going to make it worse .
I only wish i had a crystal ball to peek into the future just to see whats all going to end in ,but this is not going to happen .I think my biggest fear is not if i`m going to survive the cancer is more so what is it all going to look like when they are finished with me .As it is i suffered from panic attacks for many years too afraid to go out anywhere and i just do not want this to happen again as a result from the surgery .

Linda i have no idea how i have got this far at times i just wanted it all to end any way i`m so tired and angry that it has gone on so long now .Thank you

PaLady after listening to the cd thses past couple of days i have found some of it to be ok but then find most of it just do difficult to grasp .I do realise it works better when i`m home alone with no distractions ( something that doesn`t happen much around here )and at the moment i can only do it at night when i go to bed but with the medication for sleep and pain in my system it doesn`t take long before i go off to sleep .
This morning i woke up feeling just so sick again so after taking some maxalon i just layed there for a while then i decided to put the cd back on i found it very difficult just to keep my mind on it ,I know the psychologist told me it will take a lot of practice before i can do it ok .is there any nak to clearing out all the thoughts running through ones head ( it just seems as though my mind is racing all the time never staying put on one thing for more than a fleeting moment .
Snowflake.

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 1/24/2009 7:31 PM (GMT -7)   
Snowflake,
With many of these tapes, even if your conscious mind is wandering your subconscious is listening. Is this cd like a guided imagery or relaxation tape? You may want to still visit the website I suggested. You can listen free to small clips of a variety of her cd's; she even has one for panic and anxiety. Something like that may be more attractive to you right now. It's true making time at least once a day to listen can be important, as you're training your brain as well as your thinking. Hopefully, this has some relaxing music in the background.

Trying to clear the thoughts out of your head isn't going to happen, but that's ok. None of us get to a point of having an empty mind, so just be where you are, wherever that is, and wherever your thoughts are. Actually that's really what mindfulness is all about; just being aware of the moment - not necessarily making the moment what we consider "good" or "relaxing', just being mindful. Because sometimes just allowing ourselves to "be" can help us over time to be less anxious. I don't know if this makes sense, but go easier on yourself. You are dealing with a challenge I'm not sure I could handle, and I'll be it would challenge most of the other forum members, too. But you're hanging in there. One day at a time.

This isn't meant to be religoius in any way, but I think sometimes all we can do is have faith - faith in something, that somehow there's a light at the end of the tunnel even when we can't see it.

Another thing that can be helpful with all those thoughts is journaling. We kind of all are doing a bit of it here, but maybe you might want to keep a daily journal of how you're feeling, get all those thoughts on paper and maybe out of your head. That doesn't mean they'll go away, but you'll have a safe place to "dump" them. I find if I can calm my emotions - often by expressing them in some way - then I can think more clearly about the problem that's in front of me.

What motivation do you have to keep going? A sense of purpose larger than yourself? Believe it or not, I'm asking myself those same questions right now. I don't have the answers, but I know I have to find them. Somehow.

Hugs,

PaLady

snowflake
Veteran Member


Date Joined Feb 2007
Total Posts : 595
   Posted 1/28/2009 11:53 PM (GMT -7)   
Have not been around for a bit just too unwell and have spent a few days in bed .I think it is a result of one of the pain meds the drs has me on so i have stopped them for a bit just to make sure ..The worst part is the pain returns a lot faster than the sickness goes .Each day i wake up feeling just so sick and think i would feel so much better with out this feeling .I think yesterday was the first day i actually got up and did something but before long the nausea returned ,but atleast it was a good feeling to know it can happen if only for a little bit .
PaLady i have looked at the site but as yet have not had a chance to download the items they have to offer but will have a look at them tonight when i have a few hours to spare .I have not even listened to this one i have here i just can`t focus on anything .
Snowflake

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 1/29/2009 6:12 PM (GMT -7)   
Snowflake,
You're dealing with such a major challenge. I just wish I could help more, but know I'm thinking about you, and you can post to us anytime.

PaLady

snowflake
Veteran Member


Date Joined Feb 2007
Total Posts : 595
   Posted 2/5/2009 2:41 AM (GMT -7)   
it`s been a while and all i can say is life could not get much worse if it tried .
I have been in so much pain in muscles and my joints not to mention the pain from the cancer .
Today i gave in and went to the dr he has no idea whats happening and with the high temperature he is concerned i have picked up some type of bug ,tomorrow i`m off for a barrage of tests to see if they can pin point the cause of it all .
I`m so not looking forward to haveing the series of biopsys done nextt week .
Will drop back in at another time i just cant sit still for any length of time .
Snowflake

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 2/6/2009 4:21 PM (GMT -7)   
Snowflake,
I just want you to know I'm thinking of you, as I'm sure others here on the forum are. Write whenever you feel up to it, but I hope you feel our hugs coming your way.

(((((((((Snowflake)))))))))))

PaLady

snowflake
Veteran Member


Date Joined Feb 2007
Total Posts : 595
   Posted 2/19/2009 2:43 PM (GMT -7)   
This past week has been a shocker just so sick and since my last biopsy the pain in my face has been so bad even the morphine isn`t having that much of an effect on it .
The results came back and the news isn`t so good the cancer has spread just when the oncologist thought things were getting a bit better .Now i have to travel back up there next week to find out what they are planning .I just want it all over it has been going on for such a long time .
Snowflake.

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 2/19/2009 6:49 PM (GMT -7)   
Snowflake,
I'm so sorry to hear the news. I was wondering how you were doing, and glad you posted. I just want you to know we're here, listening, although maybe that's not much. Are there any cancer support groups in your area - your oncologist may know. Having some in-person people might be an additional support.

There is so much for you to grieve, yet there is always hope. New treatments are always in development.

I just wish I could help more. If there's anything we can do or say to be of more help, please let us know.

Hugs,

PaLady

AndreaRN
Regular Member


Date Joined Mar 2007
Total Posts : 91
   Posted 2/19/2009 6:58 PM (GMT -7)   
Wish I was there to help. My thoughts and prayers are with you. Please ask for some stronger pain meds to help you get through this. A support group may be a blessing for you.

With todays miracle drugs there is so much hope. My sister in law just had surgery on her neck, then chemo and radiation and is now cancer free.
Women who behave don't make History!

C3-4 herniation
C4-5 disectomy & fusion (anterior)
C6-7 & C7-8 L laminectomies (posterior) (need R)
Partial removal of supporting Cervical Posterior Ligament
Constant shoulder pain & tightness.intermittent neck pain
bulged discs at C6-7 & C7-8

Vicodin 7.5 for pain
Atarax 50mg q 6 hours for pain
soft collar and heating pad best friends


VIEW IMAGE


snowflake
Veteran Member


Date Joined Feb 2007
Total Posts : 595
   Posted 2/20/2009 5:25 AM (GMT -7)   
PaLady i`m not sure if there is living out here and it`s not the area the dr i see normally deals with i travel 8hours to see this one as he is the best in his field but will certainly talk to the social worker when i go up next week as she was great last time when they first told me of the cancer .

AndreaRN I know there is so much being done in the cancer research area and some wonderful breakthroughs .I have already had three lots of surgery then when that didn`t work they tried radiation and now that has not worked i have been told radical surgery is the next step i`m just not really sure i want to go there .
I`m currently on five morphine tablets a day and they help but some days it really gets to me and suffering from depression does not help either then this other bug on top of it all i`m just so tired of it all .Not to mention the worsening family problems .
Snowflake

snowflake
Veteran Member


Date Joined Feb 2007
Total Posts : 595
   Posted 2/24/2009 6:35 AM (GMT -7)   
Well later today i see my oncologist to find out what the next step ( radical surgery ) is going to be .I just cant sleep worring about it all . I had to come up here by myself as hubby couldn`t get time of work .Just have so much running through my head .Fear mainly thr fear of the unknown and of where it is all going to end .
Snowflake

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 2/24/2009 3:11 PM (GMT -7)   
((((((((Snowflake))))))))

I don't think I can begin to imagine what you're going through, but I think your anxiety is quite understandable. While you're there, why not ask if you could just talk with one of the social workers or psychologists- just to vent a bit, since you're alone. Ask if there is anyone there you can talk with because you are alone, and you just want a litttle support.

We're here, too, but I know it's not the same.

I will send hopeful energy your way - that there will be a path the doctors can help lead you through, although it may not be an easy one.

Hugs again,

PaLady

snowflake
Veteran Member


Date Joined Feb 2007
Total Posts : 595
   Posted 2/25/2009 5:08 AM (GMT -7)   
Thanks PaLady i just read your post and i didn`t get to see the social worker today when i saw the dr he told me i needed the radical surgery and that i have to ring him next wednesday and he will tell me when i have to go down for it .
I am due to see my psychologist next thursday so will see what she has to say .After the dr telling me about the surgery today i just want it over and done with as long as they get it all and i can just move on with my life .I hate being in limbo all the time .
Snowflake

PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 2/25/2009 5:35 PM (GMT -7)   
Snowflake,
I'm glad you'll be able to talk to your psychologist. If necessary, maybe even ask for extra sessions as you're preparing for this major surgery.

Please keep writing us and letting us know how we can help. I keep thinking of you and sending you healing energy

Hugs,

PaLady

White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 2/25/2009 10:40 PM (GMT -7)   
Snowflake
I have read your post, and you have touched my heart, what a strong, brave woman you are! I do wish you all the best! And you are in my prayers!

Good Luck to You
White Beard
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