Anyone else have a hard time returning to life after cancer?

Question

It's been 2 years since my stem cell transplant and I still don't feel right. I know I'll never be like I was before cancer, but I still get alot of achiness and soreness in my body and alot of fatigue. In addition , I'll probably be on meds for the rest of my life. I have been out of work since I first had cancer which was about 3 and a half years ago, I had a recurrence, and then the transplant. It feels like I will never get back to working or leading a normal life. It is also very difficult being a younger person(28) and not really being able to find any type of support groups for people my age. In addition I have to see stuff on T.V. all the time about people who recover and run hundred mile marathons, meanwhile I'm still not back to work. It can seem sometimes like society doesn't want to deal with the fact that that type of stuff is uncommon. It's also extremely hard to go from constant Dr. care to appts. every 6 months or so. Any input you guys have is appreciated.

I appreciate the answers so far. I guess part of this was to vent a little, but I also am honestly curious about how people deal with trying to return to life after going through all this crap.

John P- I'm sorry about your friend's mom, it's terrible what cancer can do. But at he same time, I asked a question and added some details to it and felt the need to vent a little bit. So when you tell me not to be "ungrateful", I believe you might as well just move on to the next question to get your yahoo points or whatever it is you were trying to do. The day to day struggles of what I have to deal with sometimes can feel unbearable. I try not to complain too much and am sorry if that's how this whole thing came off. But at the same time, your generic response to "make the best of my life" is what I've been trying to do. It's a difficult situation and just because people survive cancer doesn't mean you just turn on the positive switch and life is great. Hence the reason for the question.

Answer 1

Well you have every right to vent and gripe as much as you want, cause you have been through hell and back! Faced death and gone through an immense roller coast ride of emotions and that in itself is draining enough not to mention the treatment that you have received! The thing is not too beat yourself up over it and to do things at your own pace. Everyone is different and too feel fatigued and not quite right can last for many years but it is a matter of adapting to that and trying to manage.

"Be Positive" Yeah right! Easy to say but is it easy to do! I guess it depends upon ones underlying character, but if you were generally a fairly positive person, this shouldn't be too hard. That doesn't mean that you have to constantly have a smile on your face and be cheery, because there are time when you can not nor do you have to, but you need to look towards a bright future as this is the only life we have. You've been given a second chance and you may want to focus on what is important to you and the things you like to do! What ever it is, time will heel along with a bit of exercise to help with that fatigue.

Not wishing to bore you with my experience, but having been diagnosed with a very rare inoperable thymic carcinoma in Aug '06 and told that there was not much that could be done, I know exactly how you must of felt! My treatment involved a very intensive regime of chemo, followed by a major operation (sternotomy) to remove the tumour and then radio therapy, which finished in June of this year. I am now regarded as being in remission, but as with you, I feel very tired get all sorts of aches and jabs, have a cough and regularly think about possible recurrence or if the pain in my big toe or my cough or headache happens to be another form of cancer or brain tumour or what!! It is all perfectly natural, so I'm told and reassured from others that have gone through similar. The after effects of the chemo have also resulted in a severe case of neuropathy (damage to my nerves) resulting in numbness and loss of fine motor skills, hence a constant reminder of what I've been through, along with the regular checks.

But the thing is, I believe that it all happened for a reason and that was to slow my hectic work style (>70hours per week), refocus and appreciate what is really important in ones life. In my case; family, friends and the joy of appreciating the little pleasures in life that happen every day all around you but we are just too busy to notice. Tragic really!

Having been given this second chance at life I am now looking at doing a little bit of work again (maybe up to 20 or 30 hours per week max.) as I get too tired otherwise. And quite frankly, there are more important things to do such as play with my kids, go on holidays, restore my old Jag and watch the flowers!

At the end of the day, do what you feel is right for you and don't worry about what others say that you should be doing or feeling. The fatigue will improve over time the pain will dissapear, but I know that (certainly with myself) things will never be the same again both physically and in ones mind! But that is not a bad thing, that is good and every situation has good aspects that come out of it. All depends upon ones focus.

Quick examples of my experience and the great things were;
- Loss of hair due to chemo (Saved on hair shampoo)
- Thousands of $$$$ spend on scans and treatment (Increased our credit card award points)
- Seriously ill (Value and love of family, friends and the community which one never really realises)
- Unable to work (Plenty of time with family)
- etc......

Take it at your own pace and try to enjoy doing what you can and what you want.

We are survivors of a horrible disease and will continue to be!

All the very best!

Answer 2

People who haven't been there don't appreciate how hard it can be; fatigue following treatment can last years. Admirable though the people who run marathons etc after cancer are, it can make life hard for the rest of us when people assume that's how we could all be and that once treatment's over you're 'better' and can pick up where you left off.

I can relate to what you say about appointments too; pain though it is to have to keep going back to the hospital, when treatment's over you can feel sort of abandoned and vulnerable.

This is a short quote from the article, After the Treatment Finishes - Then What? by Dr Peter Harvey.

'Regaining trust in yourself

I cannot tell you how many people, from all walks of life, have told me that one of the most difficult consequences of their illness and its treatment is their loss of confidence. It seems to make no difference if you are a woman or a man, old or young, have a high-powered demanding job or are retired. Cancer is a great leveller in this (as in many other) respects. Of course one of the great problems with confidence is that no-one else can give it to you: you cannot get your doctor to write a prescription or buy it in a bottle from Sainsburys. You gain confidence by doing things and developing your sense of self confidence - but how do you start when you are not confident enough? It’s very easy to get trapped in a self-defeating and immobilising loop from which there seems to be no escape. Exactly why this should happen is not entirely clear. Part of it is probably due to the sense of uncontrollability and the experience of powerlessness that cancer and its treatment engenders. Another factor that will undoubtedly contribute is the sense that the world is not a safe place any more - that you are vulnerable and at risk is brought home to you with a terrible certainty.'

Below is a link to the whole article. It's long but it's well worth reading. It may help you to realise your feelings are normal, it certainly helped me.

http://www.cctrust.org.uk/article3.htm

Answer 3

I had breast cancer in 2000, had a mastectomy and chemo. I also didn't feel I returned to the level I was before all of this. However, I was more fortunate that I was able to work. It took a long time to feel a lot better. Now, my cancer is back and I had radiation. I have had a lot happen and I decided to go on an antidepressant. That has helped a lot. Also, one of my step-daughters and I go walking two times a week after work. I don't walk as much as I used to, but I notice that I do feel better that evening and the next day after walking.

If you start walking, it won't feel appealing at first. It is such a lot of work. But, little by little, you gain a little more energy. Also watch what you are eating. Think of food as medicine, because in a way it is. If you eat well, you feel better. If you eat poorly, it eventually catches up to you.

It would also be worth finding people your age to talk to. You might check with the cancer centers, The American Cancer Society, and any other places which may know of such groups. Social Workers in hospitals usually have knowledge of things like this.

I am thinking of you.

Answer 4

I had a full hysterectomy 2 yrs ago due to uterine cancer. I feel so old now, my body hurts, my muscles ache, I cant put on any weight no matter how hard I try, and I always feel exhausted . My Dr. suggested depression, but I dont believe so. I am greatful for my life, my job isnt finished here yet (I have 4 children) It just takes everything I have to pull off each day. I kinda feel as though Im wasting away. What I have been tring is to do a little exercise each day too get my blood pumping and muscles working again. Best of Luck!!! :)

Answer 5

Fatigue and fear. 5 years submit surgical procedure and virtually 5 years when you consider that medication completed I still tire swiftly - maybe it is simply part of my aging? And the fear by no means leaves. Everything abnormal prompts the worry that it would be the melanoma routine. Each examine-up serves as a reminder that it could recurr, with the week earlier than spent on aspect until I once agaon get the "all clear". Rather then that, my existence is again to 'average' for me!

Answer 6

I feel you. If you ever wanna talk, feel free to email.

I am 24, was diagnosed when I was 21. I spent the majority of 2005 recieving treatment and in the hospital. I finished treatment of chemo only in like nov of that year. They were going to go on to an auto transplant, but were unable to collect enough cells from me, so they just decided to leave it at the chemo. I was exhausted and unable to do my reg activities. Docs said I could start working Around that March, but I was sooo fatigued. Plus I had to keep med insurance for apts blood work and meds, which meant I had to work under the table (public ins). I finally started work as a nanny in Sept of last year. It was awful for the first 6 weeks or so. Never fully was able to work and have a reg life bc I was so tired.

Then I relapsed in Jan, had to quit and go back through treatment. I am just now post 120 something days from my transplant and I fear the same thing will happen. The docs have forbidded me to even think about work til this time next year. I thought, well, maybe I could volunteer on the hemotology floor of the pediatric wing. I mean, they are all under the same restrictions that I am, right? Nope, not allowed.

So I get to spend every day at home knitting. Not that I dont like crafts, but.. I have very few friends that will actually come around bc they are all uncomfortable with the cancer thing, even some family wont come around. The support groups at my hospital are all much older people, if not all elderly. Which, I enjoyed being there, but there was never anything that had people my age.

I am relying on my sig other (whom I live with) and some other family to support me financially.

I get cabin fever badly and end up with severe anxiety and panic attacks while admitted to the hospital, so as you can imagine they keep me drugged a lot. When I went in for transplant, they pulled my port a cath and replaced with a Hickman, which they just pulled. So I now do not have a central line, and it is near impossible to get into my viens. They have to use baby needles with heat packs and ativan and they have thrown me into a panic attack twice so far with them digging around trying to access the veins, and they refuse to put a port back in bc I am 'done with treatment'. Im immunosuprressed, so I have to watch everywhere I go and everything I do. I constantly have to remind visitors about washing hands illnesses and vaccines, and shots.

My mom and sig other took turns being my caregiver. My mom stayed at my house while not with me, and my s.o. was working 12 hour shifts while not with me. I came home to find that after 3 months, nothing had cleaned. I had expected my mom to do some of this, but no. I got home and had to clean the bathroom, kitchen, fold clothes and towels that were piled, dedust everything, sweep, vacuum and mop... all things I should not have been doing upon first returning home.

What I hate seeing on tv are the commercials the law offices are playing right now about benzene exposure and leukemia. I know more or less what caused my cancer by looking at the risk factors. Part of it was my own fault bc I smoked. But I do have some benzene exposure, plus i grew up in chemical valley wv. But I have no way of ever proving that it caused my cancer. I will never have some settlement to put me back on track financially.

I get called a dyke all the time for the buzz cut. Doesnt happen a whole lot where I live, but if I go to my hometown, Im bombarded with all sorts of comments like that. The elderly look at me like Im just awful. I almost shot my mouth off the other day to some elderly lady who was starring. The bad thing is she had on this nasty hot pink lipstick and red blush that was caked on. lol

Ive basically been rambling and I apologize for that. My overall point is that you are not alone. Just keep trying to hold your head up.