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Sunday, November 21, 2010

What does being a cancer survivor mean to me?

What does being a cancer survivor mean to me?
by Ugri Fenno on Sunday, November 21, 2010 at 8:56pm

I am, according to definition, an acute cancer survivor. It means that I did not die of it, but the treatment procedure started with me and I am now living it through.



What does it mean to me?



It means that nothing is the same than it used to be.



It means that I still have my family and their support, but also that my having cancer is loading them enormously in all ways: our income is less and we have to adjust to that since I don't work; it in turn means that all our planned and unplanned travels have been canceled beceuse right now we cannot afford them. It means that many other things have to be postponed or canceled too, but we can manage as long as I will have a job to return to after I ahve gone through this healing time.



It also means that when I am often tired and must concentrate in getting more fit to survive, and to prohobit the cancer from recurring, I cannot do so much at home either. It means others must share a bigger deal of household work. We have tried to involve children and I think it works as good as it can, they have to be reminded all the time, but my wonderful husband has always shared a huge deal of household work and I am afraid this will loas him even more.



What it also means is emotional stress to my near and loved ones. I know my children are living a hard time emotionally, being worried of me and stressed by the uncertainty cancer brings with itself. It feels awful to me to see that, understand that, and not being able to take that burden away. Anyway, they are just kids! It feels so unreasonable to them.



ANd to my husband. I don't know it he has anyone to talk to about his feelings. He does not talk about his fears to me, or about my possible death, or anything. When he is with me, he denies it all - at least to me. He is a wonderful support, I am just so worried that he takes a too heavy load too. I think we are all protecting each other somehow.



And to me too... I live in uncertainty and I try to find out the strength to live in it, not only now, but during the rest of my life. Sometimes I live one day at a time, sometimes, when it is really hard physikcally and / or mentally, I live one hour at a time. I live more in thne present than in the future. And for some reason ... memories have taken an important and meaningful place in my life and among those things that matter. I mean both good and bad memories.



Right now being a cancer survivor means toi me that my life goes in cycles: cytostate infusion on Friday, after three weeks Thursday lab tests, on Friday cytostates again, and in between all other doc appointments, struggling with side effects, fear of hair loss, mental coping with physical and mental feelings that are rised by the treatments... sometimes I get lost in my feelings and I ahve learned to be really cautious and careful in expressing what I feel - I think I don't have so many people around me who can really take it all so I better invest in future friendships - that they exist also in the future - and not load them so much now. Which leaves me quite alone of course.



But this has also shown to me that I have great friends... and that they are far more capable in expressing their friendship than I had ever thought of. Many take time to be with me, some travel long ways to me... I appreciate it very much. Of course, it makes the contrast really huge to those who don't have time or interest. I try to adjust and not expect anything - after all, friendship is voluntary and I don't want to be a burden to anyone. I don't want anything that anyone must force him- or herself to.



I am painfully aware of that medication affects me in all ways - physical, and mental too. I am painfully aware of that I cannot control myself as much as I'd like to. I do and say things that I should not, and I am all the time afraid I may hurt someone or be too direct or... just anything. I cannot ask for understanding because of being ill and drugged... at least I feel so. It does not give me the right to behave in an inappropriate way. I HATE to behave that way and I'd like to apologise and talk things through when it happens....



I am also very sensitive myself and get hurt easily - which I don't want to say because I feel uncvmfortable if I think people are being overly careful with me. I am sensitive - very sensitive - about my privacy, for example. I hear and read things in a different way sometimes - "understand" things that are not really there. I can say, in general, that ALL things mean a lot more to me now.



But being a survivor also means to me that I have survived the acute pass-away. It means that there is hope in my life, and hope is in a very important place in my life right now. It also means that I am doing really everything that I can and that is in my power to survive in the long-term, too. To survive permanently. It means ups and downs, and constant starting from zero... and constant fight against depression which could be caused by the physical conditon collapsing after each treatment...



And it means constant balancing with everything that I ahve listed. Surprisingly, it also means that my days are pretty busy - if I include everything that my rehabilitation needs,a nd taking care of the financies (which means writing continuous allpications to the social security), and running errands and doing some household work - I am full.time occupied anyway, even if I don't work. But I think it is worth it.I am worth the effort now. I have never invested in myself like this. I feel that now I have to. Not only for myself, but for all those who love me and care for me and who want to share many more years with me.



God speaks to me very directly, like He always has. In sermons, preaches, through friends, via the Bible. ANd that, though it comes last, is not the least thing in my life. I would be really lost without faith.

What is a cancer survivor? http://www.wisegeek.com/what-is-a-cancer-survivor.htm by Ugri Fenno on Sunday, November 21, 2010 at 7:52pm

What is a cancer survivor? http://www.wisegeek.com/what-is-a-cancer-survivor.htm
by Ugri Fenno on Sunday, November 21, 2010 at 7:52pm

A cancer survivor is generally defined as anybody who is either in the process of surviving cancer or who has already had treatment for cancer. With that definition, anybody who currently has cancer or who has had cancer at some point in his or her life can be considered a cancer survivor. There are some difficulties associated with surviving cancer, some of which are physical and some of which are emotional or social.







Many people break cancer survivors up into categories based on what phase of cancer survival they are currently in. The first phase is often called acute survivorship, and it would generally include anybody who is being treated or still suffering with the direct effects of cancer. The second phase is called extended survivorship, and this generally includes all people who have went through treatment and are trying to continue their lives afterward. Both phases of survivorship have different challenges that individuals must overcome.

When trying to survive cancer, there are often many lifestyle changes that a person has to make. For example, many people may need to give up certain poor habits. Others are generally required to change their diets or take certain supplements and medications. After having cancer, many people make a concerted effort to improve their overall health, and this can involve increasing the amount of exercise they get.

Another major challenge that many cancer survivors have is mental. For example, they may have a lot of fear about the disease recurring. These anxieties can make life very difficult for many cancer survivors. Sometimes people may worry that every sickness they get may have something to do with their cancer returning, and learning to deal with these fears is generally a big part of overcoming cancer.

A cancer survivor can often have lingering physical problems that can make life more difficult. For example, a lung cancer survivor may have difficulties with breathing that will never go away. Sometimes during cancer treatment, doctors are required to remove certain body parts or organs, and this can leave people with permanent challenges.



Some cancer survivors may have problems in their social or professional lives. They may worry about telling new people about their cancer because they fear it may lead to special treatment or being singled out. When people get cancer, it can also be a very stressful time for family and friends, and this can cause people to behave in inappropriate ways, which can lead to long-term difficulties in relationships.



Monday, November 15, 2010

Trying to control feelings

I had a really good discussion in chat with darling Mo Yee. She asked how I am and although I was having lunch and got that in my cell phone instead of laptop, I replied to her... sharing 28 years old memories from her visit in Finland has been really therapeutic and has felt so good that I have sometimes had tears in my eyes, looking at all those photos... it is such a happy feeling!



I said I was somehow messed up with feelings and completely lost, unaware of what I should do. It was not that feelings would come and go and be out of my control. It was that I was desperately trying to control all negative feelings from taking over, and I felt I was losing the battle, and I was getting desperate. I was about doing things that I knew I did not want to do, that felt really difficult and that would only have been repeating old mistakes and creating misrability.



It was lucky that she came around and started asking questions. When I started putting that mess that was in my heart and head into words, I started to realize what it was about. Being in a nonverbal state, it was impossible to even understand - not to talk about analyzing and finding solutions.



Mo Yee said my medication probably affects my mood too. I am sure it does. I am going through something that I have never gone through and that is considered a very hard treatment (the cytpstates). It is killing cancer cells, if there are any, but also other cells in me, cells that my body needs. And my body has to adjust to that and recover from that - over and over again.



Then she asked if I get enough rest. Well I most certainly don't get even near enough, if not 2 hours sleep at night is considered as such. I am exhausted to such limits that I don't know what will happen. I don't even know any reason for staying awake, I just do. Sometimes I have pains, sometimes (often!) it is asthma that is keeping me awake, sometimes, like last night, nothing - I suppose I was awake because I was too exhausted to sleep.



Then we talked about the necessity to listen to our bodies and act accordingly. I am exhausted so the absolutely most important thing in my life is to rest. I am ill (caught a cold which made asthma worse which caused me to start another course of cortizone which is such a good medicine but I hate it because of what it does to me...) so I have to focus on getting well and forget about excercise.



I was afraid I'd do uncontrolled things because of all feelings that were going round in me and that did not have a proper name or cause... I was looking at completely wrong direction, not noticing that the cause to those feelings of frustration, anger, agony, uncertainty, helplessness... was what was going on in me, my body, and what was actually quite enough to cause all those feelings... and nothing that was going on around me. Nobody had caused it, not even myself - I am seriously ill and it puts me to situations that I cannot handle. Mo Yee reminded me to pray before I react to things that arise negative feelings. I did that right away and felt the difference. Instead of feeling misused and neglected and angry and whatever - I felt calm, positive, understanding, goodwilling - it is really a miracle what prayer can do. It is amazing that i DO KNOW ALL THAT - I just had gone so lost that I had FORGOT THE BASICS: prayer, rest, listening to myself and acting accordingly. And that medication can cause terrible things.



There will be yet another challenge. I will have the ct scan of the upper belly on Friday because the doctors think there is a possibility that cancer has spread to liver. I know my life is not in my own hands, it is not in the doctors' hands - I know I need not worry - and I cannot help worrying and being afraid anyway.



I know it is important to stay positive. I just don't know if anybody who has not had cancer her/himself knows how hard it is sometimes. I have been to the point where it has started to feel wishful thiking, and I have come back from there. I feel it really weary to struggle in three weeks' periods - cyto meds infusion, then three weeks pause, then lab tests, and if body has recovered, another cyto med infusion... when I think of that, it brings tears in my eyes. It feels really really awful mentally, not to talk about that it feels awful also physically. Just when I feel that I have got on my feet, there will be another infusion and I will have to start from bottom again. I cannot even explain how it feels.



But there are so many positive things too. I have awesome friends, I didn't even know how awesome before I got cancer. I could go in detail but I know many of them are really modest too and don't want to be praised publicly. I just want to know that I SEEEE every single thing that you do for me, and that they mean so much more than you can ever think about. I love you all from the bottom of my heart. I feel I don't deserve all this - this goodness - but you keep telling me that of course I do. And if I get in real trouble like today - God will send someone of you to say the right things, to ask the right questions, if I cannot do that myself. I feel like carried by so many hands, by so many prayers from all over the world that I am really privileged. It seems incredible that complete strangers are praying for me.But for some reason - and I think the reason are my friends - they are. I am overly grateful foir everything.



But easy this is not. It is everything else. I am so good in being ill, I have lots of experience - but nothing that would have helped me go through this. To this, my experience is not enough. But I am learning. ;)

Thursday, November 11, 2010

Asthma gets nasty

I have suffered the one-week-long post-treatment blues with sick feeling, head ache, odd feelings here and there, digestive discomforts and so on. Today I felt well and thought it would be a perfect day for a walk since I have developed an obsession for fresh air although I am not very skilled or in a very good condition.



SO I went out. It has started to snow, and after ca 50 meters I started to feel really odd in my head. It was something that made me think that I will fall unconscious pretty soon. But I didn't turn back, I went on. In the next street corner I was coughing my lungs out. I had to stop to cough, and stop again, and again, and nothing helped. I realized my asthma medicin was at home and not with me. But I did not turn back, I just went on walking. In the next corner, I decided to turn back, and I was considering calling my husband so that he'd come and drive me home. It just felt too ridiculous since I was not even far away from home - just that getting back there felt impossible. My breathing was really weary and it made noise not only by outhaling but by inhaling too. I don't know how I made it back home and up the stairs but I did, and I managed even to inhale the asthma medication and after a while, go and drive my little daughter home from school. Then I thought I'd go out again, since I had only walked for 10 minutes and I felt really ashamed of it, I would like to do better... but on second thoughts, my legs were almost unable to move for having done that walking with practically very little oxygen, I was trembling all over and feeling very weak and my heart was still beating extra - so that unfortunately, it is just to rest tonight.



That is the balancing I do all the time. It is essential to get as much motion as possible to beat breast cancer and prevent it from coming anew. Sometimes asthma gets so weary that motioning is impossible. And sometimes fibromyalgia adds on problems - like I think it did today, by making asthma worse than it was actually, and making walking cause more pain and fatique than would be reasonable.



But I have feelings too. I want to get well and it feels really hard to accept that my body is fighting against me. Or maybe it is telling me things I don't want to listen? Like, that I need to rest? After all, I DID some cleaning all through the morning, till noon. That counts too.

Friday, November 5, 2010

Hair loss and new massacre Nov 5th, 2010

I am back home from the 2nd cytostate infusion. Web cam photo of course but I do look quite pale right now, a massacre going on in my body. Wanted to document that I still have my own hair although I have hair loss these days (it started yesterday) - still my hair was what all nurses came to comment on because I still have it! (I have substitutes too so I am prepared.) Used the ice cap even this time. It is supposed to prevent hair loss - works for some, doesn't work for others but does not harm and feels nice so I use it as long as it seems to be useful. Anyway, the first two weeks after the first treatment (with then ice cap on) I did not lose ONE SINGLE hair which is quite odd.



I was also told today that my eye lashes and eye brows are not going to lose, I am not going to get that medication which is driving all body hair away. Good; I was already wondering how I could make-up eye brows to which I have never done anything, and what would fake eye lashes look when fixed on with my shaky fingers - ? LOL



I took the early bus to Vaasa (113 km according to the bus fare ticket, 18, 40 €), and took a taxi back - but this time I feel a bit better and not so odd in my head than last time, that actually, I could have driven myself. But social security is paying, I pay only 9,25 € of the 140 something € taxi bill. I am getting something in refund to all tax money I have paid to this society for all these years. - The early bus leaves 5:45, which makes me stand up at 4:30 to catch it - and it is in Vaasa, precisely at Central Hospital gate, at 7:30. Then I have one hour to spend in the hospital cafe which is a lovely little place in the beautiful entrance hall and serves lots of nice treats, healthy and less healthy. I had a roll with cheese, and tea.



They had a bit difficulties getting the drop set. Firts they tried on the upper side of the hand. It hurt somewhat enormously though I am not usually sensitive to that kind of things. And it did not work either. Then came another nurse and put it on the inner side of the arm. It hurt too but less, and it worked so I said nothing. But it went on hurting all the time it was in there.Several hours.



First I get medication against feeling sick; a capsel to be had before the drop, and then some 300 ml fluid infused. Then they "wash" the tubes by running NaCl-fluid for a while, then comes the first cytostate, approximately 300 ml too. Again washing with NaCl fluid (all goes into the vein of course), then the second cytostate. The last cytostate, the third, is coloured ruby and it is eroding: if it touches the tissue, it will wear it away with chemical reaction. Therefore they add NaCl as side drop when infusing this, and therefore they also need me to say if I have any feelings at all in the arm when that infusion is done - because the vein could be broken and then it would cause damage in the tissue. It does less damage to the vein. And this one they rinse off the tubes extra carefully. Last, I get the remaining NaCl-fluid (1000 ml allthogether).



I chose to sit in an adjustable (by remote, LOL) easy chair. A young woman was sleeping a few beds away from me and snoring loudly and happily. An elderly man sat beside me in the next easy chair; he had maintaining treatment, means that his cancer, whatever it was, cannot be cured but he can live with it when he receives a cytostate treatment to keep the cancer in control. He said he had been there last time 7 months ago (I go every 3 weeks). An elderly man came with his wife, they only stayed for a little while, as long as it took to take one small dose. His voice was really bad, and he was coughing - might it have been cancer in his throat? Sounded so, because his wife was looking for support from the nurse as it appeared to be so that her husband was refusing to eat and was not taking in enough calories.



I also saw into the "suite" from where i was sitting. They took in a man who was from some department in the hospital because he came in a hospital bed and was then moved to the bed in the suite (for worse patients). He was bare skin and bones, no muscles at all. Later I heard from the breast cancer nurse whom I was seeing that in this hospital every patient is getting the best treatment there is in the world, if s/he needs it. While in Helsinki, the capital, where the patients are more, not all are allowed to have the most expensive treatments. - I have seen that: they used some radio active matter on me before the operation, and the surgeon was happy because they had it - she said that it is not always available in the world market because it is not "sexy" = it is not used in the munitions - it is not used in war technology.



Then I went to the kitchen they have there and found some roll and juice and yoghurt, and had a snack. It was already almost 6 hours since I had eaten breakfast.



Then I met the breast cancer nurse. She had already been to see me several times during the infusion. She told me about the eye brows and eye lashes and even that it is POSSIBLE to keep the own hair - that it actually happens. Well, we will see. As I said, I have substitutes...



We talked about my good luck with good friends and wonderful family, and then we talked about the kids and how they take it. Right now that is what is worrying me most. And my husband.... he is working too hard AND worrying and taking care of me... he is WONDERFUL... really a saint... and I don't know what to do to ease his burden. I try my best - and the most essential thing is to get well of course.



And I am doing my best.



Blood tests came back showing my body has some Finnish "sisu" - an amzing ability to recover from massacre of fast dividing cells. All important values had come back to normal, most had even rised from what they were.



The doctor had not been satisfied with the echo that was seen in liver. She wants to have a ct scan made to make up her mind on whether it is cancer or not. Which means that she thinks cancer is possible also in liver. Ok - if it is, then I take that too. Will find out in three weeks... I only hope that if it is cancer, it has not time to grow too much, or spread.