Cancer.....What is it really !!!!!!

This is post # 5 of 365......obviously at this rate it will be longer than a year.

When I was first diagnosed with Ovarian Cancer, I thought I had fallen through a rabbit hole like Alice and found myself in a strange land with a completely different language.    I thought I knew what cancer was....but boy was I wrong.   

Cancer is not a disease unto itself.   It is a term that is used to describe a situation where a cell has continued to grow out of control....thus a Tumour.    Cancer is also very much a laymens' term .   The disease, or type of cancer, is determined by the type of cell that has gone haywire.   It can be a cell from any part of our body...ovary, breast, bowel, skin, bone....etc.   So every cancer is a completely different disease, needing a specifically unique treatment or drug.

In order to determine the type of cancer, it is absolutely necessary for the doctors to find out what the primary cancer is.   Where did the cell originate ...from what organ did it come.    The reason this is so important is that this will help the doctors decide what forms of treatments, drugs, radiation etc to use to help stop the tumour growth and spread.    Sometimes the cancer is found at a secondary source which means that the disease has spread from its place of origin to another part of the body .  This is called metastasis .    I will give an example.  

I was diagnosed with Ovarian Cancer (OVCA)  The cell that started the cancer came from the ovaries.   When I was diagnosed the cancer had spread to my uterus, my cervix, my bowel and my stomach wall (omentum).   It was still Ovarian cancer even though it was also on all these other organs because the cell had originated in the ovary.   It was metastasised  OVCA.  This is very important to understand.    The place of origin will be the how the cancer is defined......

Now....when you are diagnosed with cancer you will be given either Stage I, Stage II, Stage III, or Stage IV

Stage I - Means that the cancer is or has been found on the originating organ....in Ovarian Cancer it would be only on the ovary

Stage II - the cancer has moved away from the original organ and spread to nearby areas... in OVCA it would be found on the ovary and also the uterus and cervix (pelvic area)

Stage III -  the cancer has moved even further away from the originating organ ....in OVCA it has moved into the pelvic and abdominal areas...such as bowel and abdominal wall

Stage IV - it has moved to part of the body very far from its originating organ....in OVCA to the chest wall, Aorta, or throat.

Each one of these stages allows the doctor to know who far the cancer has travelled and usually to some degree how old it is.....time it has been growing.

None of these stages denotes length of time to live.   Often we hear Stage IV and immediately think it is a death knell.   Although the cancer has travelled far it doesn`t necessarily mean there is no hope.

Next the cancer is given a grade...this denotes the aggressiveness of the caner.

Grade 1  - low grade cancer that is slow growing

Grade 2 -  more aggressive and faster growing

Grade 3 - very aggressive and fast growing

The interesting fact in this area is that often the faster growing cells have more likelihood of responding to chemotherapy because it attacks `fast`growing cells.  Not to say that it isn`t effective on the others.

The third are of cancer diagnosis is the cell type....which I won`t get into because its too confusing .  I have some understanding of it but now that I would trust myself to try and explain . 

When I was diagnosed with Ovarian Cancer, I was diagnosed Stage IIIc, Grade 3c, clear cell.  (the alphas are more detailed diagnostic tools)   This was the worst diagnosis one could ask for.    I had an advanced (stage III), highly aggressive (grade 3), clear cell (less than 5% of all OVCA).  The clear cell type has a high recurrence factor.  

Medical conditions and terminology are often difficult to readily understand, and often a language that is not familiar to us.   Over the last 14 years I have become more familiar than I ever really wanted to with this disease in particular and cancer in general.   I hope the above allows a better understanding for those who are fortunate enough not to know much.    It's not perfect but as I said earlier I am not a professional in this area, simply a patient trying to understand my condition.

 

Is this serious.....or not ??

I am back after a little break due to the flu.   Even we, who have serious illness, are not immune to the other bugs that knock everyone down.   There is a bit of difference, at least in the beginning of this ordeal with cancer.

Day 4 (well really 6 but who cares)

When first diagnosed, I became very suspicious of my body.   It had let me down in a big way and so I wasn't always sure that I could trust it to let me know when or when I wasn't really sick.   Initially, I was so sick that I couldn't have told you the difference between the cancer and anything else.   As time passed, and I was becoming stronger I found myself thinking at every turn (or pain) that the cancer had returned.    If my throat hurt, I didn't think cold, I thought cancer.   If my head hurt again I figured it was returning as a brain tumour.    Even if my toe hurt I would imagine that it had returned in the bone.   I became this hyper-sensitive illness specialist.....not a very good diagnostic though.   Everything had the aura of cancer and  imminent death.    It was a horrible time and one that often I would be afraid to share because I knew that people were going to think I was being nuts.  A time though that was very real and scary all the same.

Why do I share this?   The main reason is that over the years in my experiences with other cancer patients I have found that this is a common response.    We are so mistrusting of the body that has let us down that we can not longer believe that it won't do it again.    For most, the cancer was a surprise.   We had believed that the feelings, pains, aches were just ordinary and not to be worried about and so we didn't.   What had happened was we found out that cancer had been in our bodies for some time before anyone noticed.   The doctor's told me that they figure my cancer may have been growing for about a year or more.    By the time cancer actually gives symptoms it is in its eleventh hour.   Many people still believe that if you operate on a cancer person, you open them up and the cancer when exposed to the air explodes all over and they die.   This is not true.  Usually, by the time you  have the surgery that is needed the cancer has already metastasized  and is very late stage.   The reason death comes soon after, is that there was probably nothing that could be done anyways.   When I was first diagnosed it was Stage III, grade III (I will do the next blog on staging) and that meant it had been around for awhile and was no longer confined to just the ovaries.

So, the person doesn't feel well, and the next thing you know they  have cancer.    Over time you do regain some sense of trust and accept that colds, flu, pain etc can be nothing but ordinary illnesses, but you never really give up the fear.   I found myself wondering this week because of fatigue and weakness if perhaps the cancer was back.   It turned out I ended up with a nasty cold/flu.    Still uncomfortable but just like everyone else around me I am down with just a cold. 

So, if there are people in your life who seem to overreact to simple illnesses be sympathetic.   Especially if they are recently diagnosed.    The last time they felt awful it wasn't a simple cold so they need to learn that it may not be so serious next time.   

On an aside.    Before I was diagnosed with cancer I used to sometimes be afraid that a certain pain or ache might be cancer (the headache that might be the sign of a tumour etc.).   One thing I found out and this may just be me, worrying about getting cancer was worse than the actual diagnosis.  I know that sounds weird but I think the reason was that when it did happen I had all kinds of people around me to support me and help me.......in my imagination I was always alone.

Thank God for good friends and family they seem to make such a difference :)

 

What have I learnt ????

Ok, so only three days in and I have already missed a day.....this blog may actually last longer than exactly 365 days but 'oh well'.    Since being diagnosed in 2001, and going through all the things I have, 'oh well' has been my mantra for awhile now.   One thing I have learned is that the world keeps revolving whether or not I am ready and able.   BC (before cancer) I was one of those people that would almost kill herself trying to fulfill all the things I had promised to.....even when no one would notice.   I really believed that the world couldn't possibly function without my participation!!!!!

I am no longer that person, and this is a good thing.

So I have decided that my Day 3 writing will be some of the things that I have learnt about dealing with the world, that would have made the 41 years prior to cancer so much more enjoyable.

Day 3 -   We are important, but we are not indispensable!    There is a very big difference between these two words and perceptions .      Yes, we are an integral part of our family, our friends, and our community.   Take us out of the mix and none of these groups would be the same.    They are who they are because of our being a part of them.     But they would exist in a different form without us.  Maybe not as wonderful as we believe they are with our presence, but they would exist.  

This is was a very humbling realization for me.   Not that I think I am indispensable, just that I used to live like I was.   I believed that if I didn't show up, if I didn't do something, if I wasn't present somewhere, the world would not be able to function    I mean I still believe I can improve on anything going on, but it will still happen.   Sort of like when you become a mother and you think that you child can not be without you, and then you drop them off at daycare for the first time and they kiss you, wave and say goodbye.    When you pick them up they are thrilled to see you , and want to go with you, but you find out they had a great day without you......hmmmmm   a very humble moment !

So, as we deal with our illness, we need to rest assured that all the things we did before will get done.   Maybe not the same way, or what we believe to be the best way, but they will get done.    Children will thrive, albeit with challenges that hopefully will give them strength to live in this world more aware of others, friends will go places without you but you will never be far from their thoughts, and work....well they'll find someone else to do it.   Housework will never get done exactly as you may want it , but it will get done, or you learn to see dust as marking the passage of time.    Life will continue, differently, but it will.   The key is to somehow see the changes as expanding our horizons, opening up relationships, using time for more important things.  

The biggest change for myself was to see dependence as less of a weakness, and rather a gift to allow others to do more for me......to be the strong one so that they can receive the blessings that  it brings.   I loved helping people, being there for people, but never wanted to allow others the same opportunity.   Now, it is still hard, and I don't always do it, but I am more likely now to stop and see if maybe someone can help me.   Especially, now that I can't walk, asking people to drive me has taken a lot out of me but it has made me realize how much my friends and family love me.   I mean now more than ever they have the excuse to not have me around.  They could invite me to something and realize I can't make it and leave it at that.   They haven't though.   I always am invited and a ride is supplied.....guess they actually enjoy my company!

It is hard for some around us to watch us change.  I remember my daughter telling me years after my first diagnosis that she didn't know where her mother had gone.   The person in the hospital bed looked like me, but seemed so much weaker and dependent that she couldn't recognize me.    Since then, she has felt like she is important in my life because of what she can do and be for me, and I have learnt to appreciate how capable she truly is.    So we are not the same, and we are not indispensable, but we are very very important to one another in a wonderful, loving relationship.

Cancer makes a mess of so much of our lives.    Sometimes its good to recognize the potential we have found because of the disease.    I do not believe cancer is a blessing, which I have said many times over the years, but I believe in the midst of such a horrific situation there are glimmers of lights to be found.

What to DO for someone .......?????

Yesterday I started by telling you what NOT to say, so today I will go to a positive and tell what you can do when trying to console someone who has just been diagnosed (or re-diagnosed ) with cancer.

Day 2 - What CAN you do.

Often when people are sick we like to find something tangible to send them in order that they know we are thinking of them    I received a lot of flowers when I was in the hospital, to the point that at times I felt like I was in a florist shop.   I also received plants .    Some of those plants I still have in my house over 14 years later and they remind me of the time that has passed.    So if you are bound and determined to give something alive, I would suggest plants.   But simple ones not really hard to grow ones that might die....that can be seen as a superstitious omen lol.   Another great gift is a book....not about cancer, healthy diets, or new natural cures...something funny and uplifting.   Short stories are great and funny books , especially with pictures,   Remember, concentration is not a strong point during this time so keep it easy and simple.

There was something even more important that was given to me while I was at my worst which held more value and meant more to me than I can express.....that was people's time.    They would just come and sit with me during chemotherapy, or the days after, and just knit or read.   Sometimes we wouldn't even talk, and most times I would sleep.    Knowing someone else was around was the most wonderful feeling, I slept more soundly on those days than any other time.   It was as if someone else was looking after the world while I slept and I didn't have to be aware of anything.

We under value our simple presence.    To be present to someone in a quiet, simple manner can be the best gift of all.    Now, if you asked me if I wanted you to come and sit I probably would have said "no its ok" because I wouldn't have wanted to put you out.   There were those who just showed up, sometimes with a snack, soup or a book to give me and then just said, "I'll just sit here for awhile you go to sleep".   This happened so many times in the hospital, at home, during chemo that I can't count the number.  One friend, arranged for her Mom who had free time to come and just sit in my family room and knit while I slept.    I can't emphasis how much this meant to me and to my daughter.  
On the days that she knew someone would be coming by during the day, she said it was much easier for her to not worry about me while she was at school.    It was on those days too that I would usually be more rested and more likely to spend some time with her over supper or in the evening because I had rested so well earlier.

So, when you are trying to figure out what to DO for someone who needs more than you could ever offer, remember that giving your time may be the best gift of all.    And never feel like you can't pick up a broom and sweep, or put in a load of laundry while you are there.....I mean who is going to argue with someone who also does housework !!!!!!

 

You will be fine.....NOT

During a recent conversation with a friend, it was suggested perhaps I should start a second blog purely for the purpose of pointing out the Do's and Don'ts  of interacting with people who are living with cancer.   I have entertained many of my friends with stories of situations that have arisen, some funny, some serious, and some just downright nasty.    So today I will begin my educational debut of

Diplomacy for dealing with, talking to, or meeting a person with cancer.   I will try to give you one valuable tip a day for the next 365 days.


Day 1 -   Do not under any circumstances tell someone that has just been diagnosed with cancer that
everything will be alright.   Who the hell are you...God.  Do you have some light into the future that only you can see that tells you that this terrible diagnoses is just a 'blip' in their life and that 'all will be well'?

I was waiting to have surgery at one point and decided to go home and visit family beforehand.   It was about 10 days before my surgery so everyone was very happy to see me and we ate, drank, and just enjoyed ourselves.   We really didn't even talk about my illness much which was perfectly fine with me.   It was like a vacation from illness before the big day.    Then someone had the bright idea that I should go to their Psyche to have my fortune told.     A excuse me.....do you really think this time is right for this.    I mean if I am going to die I don't want to know .....you know!  

Well, the response to my hesitation was "oh don't worry everything will be alright, you aren't going to die".....think about that statement.   Here is a person who has been diagnosed with advanced cancer and will be having extensive surgery in a few days and you are telling me "you know I will be fine".

That is so wrong on a number of levels.   First, you don't know that!!!!!   Second, if you did you would probably be a lot more famous and richer than you are.    You would probably have a huge following.  Thirdly, you have just totally dismissed my biggest fear as being silly.    I may not die,   and I certainly hope I won't, but it is also very much within the range of possibilities.   So let me at least be able to feel a little upset, sad, or fearful of this possible outcome.   By telling me that I will be alright removes all those possible feelings because it means that I must be overreacting or being unreasonable.

Many things we say are meant to be helpful.   Telling a cancer patient (especially one who has just been diagnosed ) that all will be ok.....dismisses the fear and anxiety that they feel and as a human being should feel in those circumstances.   My advice is that instead of saying everything will be alright it might mean more to just :

hug them and tell them that you will be there for them no matter what happens......those words are gold to someone who is frightened....our biggest fear is being ALONE.

Please also read my other blog:   whencancerknocks.BlogSpot.ca