Living your Life with Cancer!

[curlysue50]

I am have some challenges with trying to find my purpose and place in life outside of my cancer. I am back from the brink with a stage 4 lung cancer diagnosis on August 9th, 2011. Xalkori the genetically targeted oral chemotherapy drug has made significant response in pushing back my cancer. My life should feel back to normal, but my cancer is not gone. It is just not having the devastating effect it was having on me physically. So, how do I learn to live my life without letting cancer color every decision I make? I have all kinds of time on my hand and all my friends and family are telling me to do what I want to do. To enjoy myself and live life fully. It is like starting from scratch. Being a college graduate again and deciding what to do next. I will always have cancer. How do I live my life without letting that fact take away my joy in living? I am having fun in my life. I have only been "back to normal" just over 3 months now. It looks like I have more time than I had originally thought when I was first diagnosed. ( Although, no one knows really how much time they will have left).

I attended Hope Summit 2012 and was so inspired to see the positive attitudes, love and caring among lung cancer survivors. I saw many people who have gone on with their lives and are living each moment with purpose. I am thinking this did not happen easily or automatically, but took courage and hard work to get to this point. I wondered if anyone had any advice on what worked for them? How they found themselves, even with their cancer, without letting cancer define who they are or what they are able to do.

I just seem to be having a tough time finding focus. I worked full time for years and had my little hobbies, but nothing big enough to fill all the time I have now. I have been staying productive, cleaning and sorting closets, giving away clothes that I just don't wear, organizing my house and doing all those things that get left undone when you work a full time job. Now I think it is time to do something for me. Something that uses my talents and abilities and will give me some satisfaction in my accomplishments. Not that I am putting too much pressure on myself. I want to fill my mind and heart and share that with my friends, family and anyone else that can benefit from what I have learned in my life journey so far.

I guess I have rambled a bit, but if anyone has any wisdom on the subject I would love to hear it. I heard Eric Byrne say at the Summit that he was able to get back to the person he was BEFORE his cancer diagnosis. Now that sounds positively wonderful. Because now I have the time to be that person AND pursue some of my heart's desires.

Have a wonderful day!

Susan Gamble

[eric byrne]

Hi Susan,

Thank you for sharing your thoughts,they make so much sense to me.I returned to my work as a college lecturer in March 2009 following my surgery in January.I had visited my doc to get "signed off" from sick leave,he was'nt impressed,told me I'd be better taking some quality time out with my wife,since I had only two years left-max.He did go on to say,he once had a patient that had lung cancer that survived five years-what a character-but,you are not him.

I did return to work,on the day I returned,I entered my classroom,another lecturer was in the room with my third year students,whom I had,nt seen for nearly six months.One of my students ventured to ask "Are you visiting us?" "No",I reply,next minute theres a round of applause from my class,that I still hear now.Work to me at this time was absolutely essential to break my circumspection of being a lung cancer survivor and all its inherent problems,I returned back to the land of the living,my work restored me,three years later,my college is informed by the government that due to the economic climate their funding for next term would be cut by 10%,which in effect meant that a 10% in staff and students would have to be cut.I eventually accepted a package called voluntary severance.So after a teaching career of almost 40 years I entered retirement with some apprehension last April.

This is where we converge,what on earth will I do with all this new found time?.

Usually retired lecturers if they are interested,can get plenty of part time work,supply teaching, absence cover etc,but at this moment in time,my subject of Design and Construction is in the doldrums due to the economic situation in the Construction industry.So I have found loads of alternative "distractions",gyming,swimming and yoga daily,avocating work,on-line activities etc,really I dont have much room in my life to dwell on being a "survivor" I just get on with enjoying myself.One of my favourite sayings I picked up on my cancer journey was "Worry is like sitting in a rocking chair,it gives you something to do,but it dos'nt get you anywhere".

I know,I do ramble on a bit,I hope you might find something out of what I have been trying to say.Best wishes.

[eric byrne]

Ooops sorry "No I reply-I am back for good" wish I would remember to proof read what I have written before clicking the submit button.LOL.

[curlysue50]

Eric:

Thanks for your reply! I worked for many years, too and my job when I was diagnosed, was a contract position which was subject to end 2 months later. So, I also do not have a job to go back to. What I take from your answer is that I need to try some things I may not have tried before, find the things I like and keep myself busy. If I am sitting around being bored, I need to give something a try. I may not like everything, but there is bound to be something out there for me. May not be an overnight proposition, but I need to get out there and do something! It sounds like you keep pretty busy now and you really seem happy! That is such an encouragement.

Thanks,

Susan

[RandyW]

what is your passionate hobby?? pursue it with classes if need be to further your interest. Deb took art lessons before she passed away and had so much fun doing whatever she wanted too when she wanted too!!

[Janet B]

Curlysue

I am still working on this too, but I can tell you what I have found so far that helps.

1. Give yourself time to adjust.  You worked for a long time, any one who has worked for years and then stops, cancer or not, has trouble adjusting.  I loved my job, but I hated going to work everyday.  I dreamed of the day I wouldn't have to anymore.  When that day was forced on me, I was shocked at how lost I felt.  

2. Experiment, you are free to do as you please.  try something new, if you don't like it, stop, and try something different.  This is your chance to do something you love without HAVING to do it.  I was a preschool teacher.  I love animals.  I managed to find a rescue farm that has a preschool program.  I volunteer, so if I don't feel up to it some days, or have Drs.. appointments, I don't have to feel bad about not going.  That program is only 2 days a week, which  leaves a lot of time to fill. I go to the beach, without guilt, as much as possible, I volunteer at church, I am free to visit friends, take day trips, and crochet and read to my hearts content.  It is different than working everyday, but I have learned to love my new life.  I have learned to be thankful for the time to live life instead of work through it.

3. Sure there  are days when I am bored and lonely, and then I get scared and anxious.  On those days, if I am up to it, I force myself out of the house to shop or visit, if I am not, I cuddle up with a good movie, and let myself grieve a little.

4.You are new to this.  Of course you are still thinking  "cancer" all the time.  As time goes by and you realize life goes on, as you find things to fill your days, you will, believe it or not, not think about it all the time.  There will be days when it is not your first thought in the morning or last at night.

5.  I just learned this.  And it was big for me. I was exhausted after the Summit.  I am not used to such long days, with so much activity and no nap.  I was exhausted when I got home and slept for days. Some of the people I met at the Summit sounded so full of energy on Facebook  and I was feeling  so badly that I wasn't handling things as well.  But, someone said the same thing to me, they wondered how I was so full of energy because they were exhausted!  I think it is easy to misinterpret people's feelings, emotions and energy levels when you only speak to them with the written word. We are all struggling in our own way and no one has all the answers.  Everyone has good days and bad, full days and , as I call them, "slug days". The important thing, I think, is that we have days.

I am so sorry we never connected at the Summit, next year!!!

Peace, Janet

[curlysue50]

Janet:

Thank you for letting me know I am okay where I am right now. I am doing a lot of what you suggest, but somehow, and it know this sounds crazy, I feel guilty for not doing more. I, like you was exhausted at the Summit. My 3 sisters and I drove the 9 hours to DC from Michigan and I walked to Georgetown with them Friday night after we arrived and got to sleep after midnight. Saturday night we took the night tour of DC. It was fabulous, but we got home at 11:30 pm and I am not sure when we actually slept. I so enjoyed myself, but I think I sometimes forget to allow myself a nap, or extra rest that my body needs. I have always pushed so hard and done so much. I forgot how hard my body must be fighting against the cancer. My chemotherapy drug is working every day to keep the malignant cells from growing. It is okay to take care of myself.

I live in a small rural town, so to do anything (besides go to the tiny local market in town) is about a 30 minute drive. But, I do go to shop, for excercise (walking around Target is excercise when 6 months ago I could only do it on a motorized cart), pick up groceries etc. I have a couple of good friends, who although they work full time, get out of work in the early afternoon, I have a 4 1/2 year old grandson and I will bring him over for the afternoon to play. When I get tired I take him home. He is so much fun, but very active. Last night I could not get him still enough for a picture, so I could only shoot video.

My husband and I have a cottage that we have been working on for about 5 years. Gutted it and remodeled on a budget sort of thing. It is on 10 acres of woods with sand dunes. About a mile in from Lake Michigan. I too love animals and we have had all sorts, including a cougar, which we heard twice, and my husband actually saw walk in front of our pond. We have wild turkeys which do their mating dance outside my bedroom window, deer, red foxes (one year we found a den of kits and saw them several times over the summer before they left the den, awesome!), coyotes and of course all sorts of birds. Bluebirds in the bluebird house, again this year. I planted all sorts of ferns, ornamental grasses, wildflowers and flowering shrubs. Last year I even finally got my red dogwood. We had hoped to someday retire to our cottage. My first visit back to the cottage after treatment was really hard. This place we had put so much into would no longer be a place I could retire. I would never see my dogwood grow larger and my azaleas and rhododendrons fill in the growing room I had allowed for them. Much of my life I spent planning for "when I had time to enjoy my life, later". Now I realize I was enjoying what I was doing, but not fully realizing it. So, much of how we deal with cancer is our attitude about what we do have and not what we don't have. I may not have all the time I had hoped for, but no one really knows what they have.

I have always liked taking pictures and may look into a camera that is not super complicated, but will let me play a little more with effects, and lighting. My oldest daughter is a wonderful photographer and does it as part of her job, as well as for fun. She is going to do some research for me and see if we can find a camera I can afford. And them maybe an online course or website that can teach me some of the basics of lighting and composition.

I have to admit I have already thought about attending Hope Summit again, next year. I was a bit afraid to plan that far ahead, but I think I would fly instead of drive and just bring my practical, "you need your sleep" husband. I loved having my sisters, but just barely kept up. Maybe there could be a quieter, not so active Saturday night activity for those that need some down time. Just sitting quietly and gabbing, sharing, in a relaxing setting and then to bed early.

I appreciate you taking the time to share and I will give myself time to adjust without putting on so much pressure. I have even bragged when I did not feel the need for a nap, even though I probably should have given myself permission to take one!

Take care, you are much appreciated!

Susan

[eric byrne]

Hi Susan,

Gosh reading of your lifestyle just sounds so ideal,loved your descriptions.My keep fit regime includes on Tuesdays and Fridays , 90 minutes sessions of yoga,something until recently I never attempted before,I am also in a class with approx 16 women,who have accepted me without any problems.Its the perfect compliment to my gymming and swimming,all about relaxation,breathing and stretching muscles you never even knew you had,look this up in your local area,think you will enjoy attending these classes.

[Alan]

Susan, I for one will be happy to join you next year at the summitt on Saturdy night for that quiet time talking. I bet more than a few would also enjoy that. I totally understand all that has been written here. I touched base with some but didn't get a chance to meet you or even connect the dots to "curlysue". See you next year.