Feeling blue

Oh I feel a lot less motivated and deflated since all treatment has finished and I'm not on tamoxifen . It's getting your head around it all and everyone thinks it's all fixed , get on with it but it's not as simple as that

Hi there Michele,

I think its normal to feel low and need to moan about it. Once you have a cancer diagnosis life will never be the same again.
I am 18 months on tamoxifen. I alternate between feeling low and wanting to get on with the life I have now! I am finding it very hard to get on, not least because I am still waiting for reconstruction surgery. When others encourage by saying "you look well, it must be great to be over it" It just makes it worse, I feel like shouting back "I don't feel like I did before, my long thick hair is now sparse and thin and I lack energy" However that said, it is better than the alternative!! We have to be grateful that the treatment is there and we are alive. It just takes time to get used to the new reality.

sending a cyber hug - Karen

Hiya...I'm now the 5 months into tamoxifen too. I had a rocky start on it with other medications I was on for peripheral neuropathy reacting in a way that caused fluid retention in my legs/feet. Have that sorted now but still not an easy ride. Just had to come off a new med that seemed to be helping peripheral neuropathy as its known to interact with tamoxifen. I also tried another drug that is okay to take with tamoxifen but it didn't suit as I was like a zombie on it.

As for joint pain my knees are taking the brunt of it for some reason. Woke up one day a few weeks ago with 2 achy knees and now its constant. Luckily, I am being treated for pain regarding the peripheral neuropathy in my hands/feet so mentioned the knee pains and I am now on another pain med for that, but it works, which is the main thing. So back able to walk etc now which is great for the head. Have made a decision a long time ago now that whatever drugs I need for pain I will take to enable me to have a 'good' life without pain if possible.

I think it does all hit in a little bit after the 'rush' of treatments. I've started doing 'art therapy' in my local cancer support centre and I know this is the sort of thing I need to do now to keep my head in a good place. Cancer effects the body but I feel my mind took the brunt of it. Keeping in a good place mentally is so important to me now, thats where my real strengths lie.

I do get annoyed when close family or friends cant seem to understand that even though I am finished chemo/radio I do have more surgery ahead and the medications/side effects that I live with on a daily basis are a whole new world compared to the one I experienced prior to cancer. My life has changed for sure. I now live with pain that I never lived with before. I have also been told the nerve damage from chemo is looking like permanent damage now which I will have to accept and manage from here on in. Its about managing pain but also managing simple tasks that once were so easy and now that bit more difficult.

But I still like to see cancer for the medical condition it is. I have had a condition that needed aggressive treatments to keep me alive and unfortunatly the side effects the treatment caused can be permanent and life changing. I now work very hard on looking after my mind. I never did before but I feel now that I have to....I can't go back to a life with too much stress in it. I choose to live a 'less-stress' life now.

I would tell people, who ask, that having chemo/radio/surgery is one part of cancer, but the hardest and life changing part is learning to live again after that treatment ends. Tamoxifen may only be a little pill you pop once a day but wow what a pill it is.

Hiya...I'm now the 5 months into tamoxifen too. I had a rocky start on it with other medications I was on for peripheral neuropathy reacting in a way that caused fluid retention in my legs/feet. Have that sorted now but still not an easy ride. Just had to come off a new med that seemed to be helping peripheral neuropathy as its known to interact with tamoxifen. I also tried another drug that is okay to take with tamoxifen but it didn't suit as I was like a zombie on it.

As for joint pain my knees are taking the brunt of it for some reason. Woke up one day a few weeks ago with 2 achy knees and now its constant. Luckily, I am being treated for pain regarding the peripheral neuropathy in my hands/feet so mentioned the knee pains and I am now on another pain med for that, but it works, which is the main thing. So back able to walk etc now which is great for the head. Have made a decision a long time ago now that whatever drugs I need for pain I will take to enable me to have a 'good' life without pain if possible.

I think it does all hit in a little bit after the 'rush' of treatments. I've started doing 'art therapy' in my local cancer support centre and I know this is the sort of thing I need to do now to keep my head in a good place. Cancer effects the body but I feel my mind took the brunt of it. Keeping in a good place mentally is so important to me now, thats where my real strengths lie.

I do get annoyed when close family or friends cant seem to understand that even though I am finished chemo/radio I do have more surgery ahead and the medications/side effects that I live with on a daily basis are a whole new world compared to the one I experienced prior to cancer. My life has changed for sure. I now live with pain that I never lived with before. I have also been told the nerve damage from chemo is looking like permanent damage now which I will have to accept and manage from here on in. Its about managing pain but also managing simple tasks that once were so easy and now that bit more difficult.

But I still like to see cancer for the medical condition it is. I have had a condition that needed aggressive treatments to keep me alive and unfortunatly the side effects the treatment caused can be permanent and life changing. I now work very hard on looking after my mind. I never did before but I feel now that I have to....I can't go back to a life with too much stress in it. I choose to live a 'less-stress' life now.

I would tell people, who ask, that having chemo/radio/surgery is one part of cancer, but the hardest and life changing part is learning to live again after that treatment ends. Tamoxifen may only be a little pill you pop once a day but wow what a pill it is.

Thanks everyone for the words of encouragement and support. I know you all know where I am coming from, whereas I have to keep my family protected from some of these feelings. My husband has been fantastic and has said the exact same things that you have been saying. I need to start looking after my mental health now. Have a less stressful life. My problem is trying to create a work-life balance. I am a DISASTER. I must learn to say no and give more time for myself. Keep saying the world will not fall apart if I dont get somethong done today. Keep healthy and positive everyone and thanks again.

Hi Sunshine71,

If you are less than 2 years after the end of chemo, there is still good hope of continued nerve recovery. Don't give up hope yet

I updated this thread when I saw your post. Things have got a lot better for me for sure. I hope they do for you too.

http://www.forum.cancer.ie/phpBB3/viewt ... f=11&t=703

Hugs

Kath

[b:3vq2vs8y]Hello all -so glad to read all your responses in this forum . It's so reassuring to think others are going through the same struggles adjusting to illness and it's threatment . I have just come through a year of threatment and have started taking the tamoxifin . I ' ve had my final mamogram [/b:3vq2vs8y] but awaiting those results in another two weeks . At this stage I feel no matter what they throw at me I' ll just have to deal with that - nothing would surprise me anymore. I had no lumps and even when the consultant did a physical examination she could feel nothing. It was only caught on a routine mamogram but was very aggressive and had passed into the nodes. I can fully identify with needing to distress and looking after your mental well being . I have become very solitary in my existence- a safe haven for spiritual nurturing and don ' t feel the need for any socialising much. In many ways I do feel I have 'absent' from the real world for the past year and now it's like trying to find a new reality which has as much to do with defining physical boundaries as it has to do with emotional and spiritual boundaries. Family and people that 'know' you are the biggest challenge I feel because they very often are looking at you through the same perspective and what lies beneath is a very different you -and that's a huge stress.

Keep writing all -you don't realise the support you are

Stargazer x

Hello Stargazer

You're so right when you say... "Family and people that 'know' you are the biggest challenge I feel because they very often are looking at you through the same perspective and what lies beneath is a very different you"..

My collegues in work joke that I am 'having them on' as they say I look so well - and although I find it very hurtful I'm also aware that they have no idea how I'm feeling inside... I am DREADING my upcoming mammogram and at the same time I'm excited to get the all clear (everything crossed) and have another bit behind me

A 'rollercoaster ride' does describe it pretty well though eh!

All the best with your results and fingers crossed that Tamoxifen will go lightly on you

Resolute x

Hi Resolute
give yourself a clap on the back here- back at work so soon and going through ' the motions of ordinary living ' thats a big achievement! I' m sure the girls at work mean well in what they are saying to you -but what most people don't get is while cancer hits you physically in the short term and durning the threatment stage it can equally hit you psychologically And spiritually in the aftermath-and that's not always visible to those around you. It does undermine your confidence and I know myself in my own case there was a huge element of 'fake it till you make it' with me in the public arena-while tears and sadness flowed within my private self.
In relation to the 'dreaded mamogram' yes your so right the word DREADED is the only operative word here to describe this event. Trying not to worry is very difficult because we all know what a positive result entails....I've had some councilling durning my threatment and the most value able exercise I've taken from it is the following .When in distress or feeling overwhelmed just 'take a minute' breedth a deep breath in and exhale all that anxiety out of your being. This I found to be most useful and I hope it helps all who read my message here

Good luck on that mamagram Resolute -let us know how it went for you
Stargazer x

Hi all
Had such a bad day of blues today. Was to meet up with my radio onchologist for final meeting after finishing radiotheraphy a month ago and just could'nt bring myself to attend and cancelled for another time. Also was to meet my medical onchologist tomorrow after a trial of tamoxifin of a month and cancelled that too . It's all become too stressful- has anybody else felt they couldn't go to their appointments??
Just felt enough is enough
Stargazer

No can't say I ever thought of cancelling. I actually felt reassured by talking to them. I think you should reschedule your appointments and tell them how you are feeling that's what they are there for, seriously. You'll get through this we've all been there but it's important to talk. We get sick of the "abnormal' but believe you me a certain type of normality does return, I'm finished with hospitals since September and have a mammogram in April and back in work two days a week and life is good, chin up an make another appointment xxx

Hello Stargazer,
I agree with Wicklow Lady. I have just finished that series of meetings with radiation/surgeon/med oncologists. All were positive experiences, none of them were about getting potentially worrying test results, or finding out whether or not I needed chemo - those were the last occasions I had to meet with most of those men and women.
I looked upon those appointments as opportunities to ask the questions I was too "hare in the headlight" to ask in previous months (make a list!). I also viewed them as yet another milestone ticked in the treatment process and the return to "normal" - whatever that is . From the medical process point of view, those appointments are also about completing the said process, so they are important.
I too think you should re-schedule those appointments, and make the most, especially with the med onc, to raise your mood issues and ask that options be given to you to address those. You have just gone through a very, very stressful period of your life, and you clearly still need some help, even if it is no longer strictly speaking about cancer treatment. Go to your appointments, prepare a list of queries and questions in advance, and make sure they are all answered for you before you leave. In my experience, oncologists are very sympathetic to their patients' side effects, be they physical or psychological. Don't stay at home worried and blue!
I wish you the very, very best. Keep us posted on how you go!
Catherine

Hello ladies - thank you all for your words of comfort and support.

I rescheduled my appointments for two weeks time. I feel by just saying 'no more' to the treadmill it gave me a feeling of choice and a measure of control again-it was such a relentless series of tests and scans etc I really just questioned how necessary it was to be at a final interview-all they needed was 'data'! - data to define the problem data to threat the problem and data to check that it was successful!! The fact that it was a human 'being'at the other end of this process was irrelvant . My relationship with my medical onchologists was poor anyway . To me she was a medical scientist-a very competent researcher who was threating a disease- and that's all that mattered . So why now when all is done and dusted does it matter that I'm a person after all and not some animal being tested in a laboratory.
Maybe I will sit with down with my pen and plan some questions for my next interviews.

Thanks again for taking the time to respond
Stargazer