I have had it - if you ask...!!

norwegian · 01-22-2009, 10:10 AM

It is now about two years since I was diagnosed, and I guess I'm supposed to be happy it is all over... But my feelings are mixed. I do not have any treatment now,- I'm NED as you call it. ... I hope I am anyway.... who knows ?... not my doctor, nor my onc. As far as I can see - they guess, qualified guesses, but still. In Norway we don't have the possibility of a Pet scan - this is only offered to those with tumors they can't really find and to those with many tumors.
I am cancer free they tell me, and I know I should be pleased. I guess I suffer from what Colleens husband call the blues or something like that.

Ok, what I really wanted to complain about today is all the pain that I have...
My back hurts a lot. I have had scintigrafi which we call it (- same word in english?) - last time in august. All NED,- but painful, or tired in a way.
My joints hurts, specially my feet in the mornings. My arm....big, weak, swollen and painful. Cant sleep on my right side,- because of that. Neither can I sleep on my left side - due to my hip, - inflammation because I have had to sleep only on my left side for two years, because of my arm - and so on - and so on.... I cannot sleep on my back, - because then it hurts after a while. And not on my stomac - beacuse my back hurts and my breast is not there anymore....
So I need sleeping pills... But I can't go on like this!!

and then there is my port, taken away in June. Still the scar is not healed - I need to cover it with plaster...Its sore...

Help, help...

sarah · 01-22-2009, 10:34 AM

Oh dear, I think we've all had similar days and weeks. Have some chocolate and a glass of red wine and watch a good movie. Then when you go to bed, read a book - books are so wonderful for taking you out of your problems. As for the aches and pains, have you tried ibuprofen? it's a miracle as far as I'm concerned but must be taken with food.
Tomorrow you may feel better, I also felt like bitching today! maybe it's the weather. A friend used to say to me, any day above ground is a good day and having lost a few close friends to this horrible disease this year, I strongly agree.
NED's so much better than them telling you they've found something. You need some good hugs. Considered yourself hugged. You are not alone in this journey.
hugs and love sarah

Colleens_Husband · 01-22-2009, 11:15 AM

Dear Norwegian:

Colleen had an oncologist visit yesterday and she was finally pronounced NED. Hurray! I guess. I'm not sure how that makes me feel. Maybe that means we need to be even more vigilant.

I also had an opportunity to ask the doctor about most of the issues you talked about. A PET scan will only realistically find tumors larger than two to two and a half centimeters. Often there are other manifestations of a tumor which can be detected before it gets to be big enough so a PET scan can find it.

The oncologist said he didn't want to scare us by telling what to look for in a tumor, otherwise we will be scared of every pain and bump. He said if we insisted, he would tell us signs to look for, but he asked if we would be better off not worrying about everything all of the time and we just live our life as best we can? He said Colleen is going to be coming in for a checkup every three months for the next five years so he would be the vigilant one and we can have some peace of mind.

So are we still afraid cancer could rear its ugly head once again. Absolutely. Even so, we are starting to think about getting out of 'cancer mode' and moving on to 'living a good life' mode.

Anyways, I will keep you in my thoughts and prayers.

Lee

Jean · 01-22-2009, 11:17 AM

Dear Norweigan,
Of course your feelings are mixed....first of all you need a good nighs sleep for you're well being. You sound exhuasted from lack of a good nights sleep.

The good news is that you are two years out and are NED...it takes time to get your mindset and body back on track - hearing you have bc and then surgery, treatment, my gosh of course you feel mixed up.

We do have to learn to live in an place after dx. But consider this, does anyone know what to expect the next day? Life is always throwing something in our path, be it great things or sad ones. It is how we learn
to deal with them. (It is not easy or even fair).

We all hate cancer, if it were in a human physcial form I would put my hands around it's neck and put all my strength into crushing it's throat and taking the life out of it. (along with all my Her2 sisters).

Be patient with yourself. It takes time to heal and we all heal at different times and levels. I wonder if you have any type of support group at your cancer center. You may find it helpful to belong.

If it helps any, many dr. here in the US do not believe in scans...they tell their patients unless there are symptoms they do not order them. Of course staging is important when dr. orders scans.

Please know we are also here for you.
Sending you hugs,
Jean

Rich66 · 01-22-2009, 12:22 PM

You might consider the phrase" In Norway we don't have the possibility of a Pet scan" Is that really true? I mean, I had to push my mom's oncs for a breast MRI, threatening to pay out of pocket if need be. After a meeting that included the head of radiology who agreed with me that there was no medical reason not to do it, the onc ordered it and insurance payed for it. But..in hindsight, I wish I had pushed for a PET. These things are expensive but sometimes costs and payment plans can be negotiated when paying as an individual. I'm just trying to suggest that there are bean counters and cost/benefit ratios involved and ways to circumvent them for the sake of your own care. Seems to me there are outdated diagnostic guidelines being adhered to even as treatment possibilities advance. Choice is still there in many cases...just hidden from us at times.

StephN · 01-22-2009, 12:44 PM

Dear Norwegian -
I am 1/4 Norwegian myself.

The description of your swollen and painful arm makes me think you are suffering from Lymphedema for one thing. Or it could be a case of cellulitis. Please get that checked out right away. You can check this site or the whole internet for Lymphedema and how to treat it.

"Scintigraphi" - I don't know what that is, but is it something like fusing two discs? Sounds like a nerve is being pinched someplace.

Try sleeping in a semi-upright position with two or 3 pillows. And using a heating pad for your back or hip while you are falling alseep.

Painful points can haunt us for a year or more after chemo. Just one of the long term side effects. I took glucosomine with MSN and this is only one of several supplements especially for joint problems.

Hope you can find some relief soon.

Lien · 01-22-2009, 12:54 PM

Dear Norwegian,

I had similar feelings after finishing therapy. It felt like I was doing something, had some kind of control over the disease as long as I was in active treatment. Big guns, like surgery & rads gave me the feeling that I was using all available forces to combat the disease.

Now you are recuperating from surgery & other treatments, you very likely have side effects from your medication and/or chemo, and it sounds as if you have a pretty bad case of lymphedema. The recuperation takes time, but the lymphedema can be treated and you could try to change your meds. Are you on hormonal therapy? I'd talk to the doc if I were you. If not, mild exercise might help. I think you need a referral to a physical therapist who specializes in treating lymphedema.

When I went for my 2 year checkup, my doc congratulated me. The first two years are the biggest hurdle. If your cancer hasn't come back by then, your chances of survival are getting better every day.

If you are tired constantly, you probably (are beginning to) feel depressed. Sleep deprivation does that to a person. It makes one more anxious too. Been through that, so I know. And you probably don't exercise a lot, because of the pain and the tiredness. You are stuck in a cycle that's hard to break. But exercise helps you fight depression and could possibly improve the pain and stiffness in your joints. I was in a trial this past summer and I really noticed improvement in my hot flashes, my stiffness and my emotions. Hated the exercise, though!

The only reason I could keep it up, was because my son was recuperating from a serious foot injury and needed to start running again. So we ran together. Or rather, we wobbled together at first. You should have seen us; we looked really silly. When we were camping in France, we ran in the dark, with flashlights, so nobody could see us. It was really quite hilarious. We stumbled a lot, but we had some good laughs as well.

I know this is probably not very helpful. Just wanted to say that I know how you feel and that there's light at the end of the tunnel. Like you, I was really scared for the first couple of years. Every ache or pain seemed to be a sure sign that something was wrong. But my docs just said: wait a couple of weeks, then we'll see. And the aches always went away.

I hope this will be the case for you too! And I do hope that you'll get help with the pain in your arm, the sleeping problems and the fears. It's not necessary to suffer like that. Talk to your doctors and tell them what you need, apart from the scans.

Love

Jacqueline

norwegian · 01-22-2009, 01:57 PM

Thank you all - for your kind and sweet replies!! It makes me feel much better just to think of it, - that I'm not alone..
As for the pet scan machines - we don't have many in Norway, and they are not being used to calm patients down. This is what I was told by my onc. And - if I use my brain,- I understand why. We don't have health insurances. We pay for services until a limit - (each year) and after that everything - doctors, important medicines, xrays - it is all free. The limit is about 285 dollar. We can not buy a pet scan for own money.

I do have lymphedema, and see a physical therapist every second week, but... I'm so fed up!!

I do not have hormones. I have no medications any more (except sleeping pills - which really give me a nice timeout I must admit)

Anyway. My sleep problems and complains..Yes, - I think you are right. I am depressed. I am, I really am. Your answers is such an eyeopener!
I will go to my doctor tomorrow and ask for help.
Thank you again, It is so comforting that you are there!
I can feel all the hugs...
Tomorrow, then...My new life will start.
Lucky me...

Rich66 · 01-22-2009, 02:15 PM

Well..I'm sorry to hear fee for service is not possible. I hope things don't go that way here.

Paty · 01-22-2009, 08:37 PM

Dear Norwegian,

I sometimes feel depressed too and so afraid that 'the enemy' will come back again and that I will not know that it is there. The resources in my country are sometimes limited. My doctor is not the kind of doctor that is allways ordering scans unless there are bizarre sintomes somewhere. Pets are very expensive and they are not covered by insurance unless you really NEED it, and like that I can go on and on. Anyway, I still think my doctor is my angel. When I was first depressed with the illness my doctor gave me antidepressants, this was the best thing that could happen to me during the difficult times, what I was so thankful about is that I could have peaceful night sleeps and you can't immagine what a difference they made. Talk to your doctor, I am sure he can give you something to feel better, and believe me, one day, things will be almost as normal as they were before. Lots of love.

Paty

Bill · 01-22-2009, 09:37 PM

Hi Norwegian! I wish I could help more, but the one thing you said that struck me was your port removal and it's lack of healing. The same thing happened to Nicola and after awhile they found out that her meds had made her diabetic. They gave her insulin and in no time, her port removal site healed up. Maybe one thing you should do is have them check your blood sugar. I was amazed that our docs had not done that until she was admitted to the hospital after months of fighting this problem. Thoughts and prayers for you, Norrie.

norwegian · 01-23-2009, 01:01 AM

I will definately ask for wide blood tests - diabetes and everything, Bill. Thanks!

To StephN; what I mean by scintigraphi is when you drink fluid som that they an take a good xray of your bones... What do you call it? 1/4 norwegian... how nice to hear

As for the pet scan and fee - i don't know really. Wouldn't it then be a possibility only for rich people? It is- like in Mexico - very very expensive,- and since we don't have health insurance her ... I don't know..
I guess I have to find my way of coping with the insecurity. It is may be what God wants me to learn.

Rich66 · 01-23-2009, 01:13 AM

"Wouldn't it then be a possibility only for rich people?"
I'm not saying only fee for service to the exclusion of insurance. The personal anecdote about the MRI should tell you that it can be dangerous to have only one route to access. Iw would always want the chance to decide for myself the worth of a given health care option. If I can go into debt for a flat screen tv, maybe a scan or the like holds more value to me.

Melissa · 01-23-2009, 06:28 AM

Norwegian,
Seeing a lymphedema specialist every second week is not enough. With lymphedema you need to go 3 -4 times/week for 3-4 weeks. I know several women that have had a lot of success with treatment. Ask your onc again about the lymphedema treatment. I HATE CANCER, ALL CANCER! I attend a cancer support group, not for everyone, but for me the group allows time to vent, to complain, to hate cancer, etc. and to support others who are in need. Also people in my group are teaching me to see the good things cancer has to give. I'm not there yet - I still can't see any good in a disease. Although I do think of the many people I've meant, realizing there is no subsitute for our time here, loving more deeply, etc. but frankly I still hate cancer. I also walk a lot, with two other BC survivors, which helps with the body aches and brain(harder for me to focus). I know it's hard, at times it felt like I was in a dark pit clawing my way out . You'll crawl out - I know you will. Sending you well wishes.