Finding a window after the door closes!!!!

Well, if there is anyone still reading this, and I wouldn't be surprised if so because I have been very negligent in writing.   If truth be told, I have been avoiding writing because I don't like to write the negative things that happen with cancer.   I try really hard all the time to find the positive side to life despite a cancer diagnosis but lately that has been difficult.

I had the best summer ever and didn't really feel, think, or even at times admit that I had a serious disease.  It was good for the psyche and I would suggest that everyone should take a vacation from life in the real world and find a place to be.....just be....nothing else, no one else!    But, one must be ready to come back and those times can be hard.   Not impossible, but certainly energy reducing and smack between the eye difficult.  So, I am back and think I have found my equilibrium....sort of :)

After arriving home I had a doctor's appointment.  I was flying high and had all these neat ideas of how I was going to spend the remainder of my life......NOT GOING TO HAPPEN.   The shitty thing about cancer, or any serious disease, is that you end up being at the mercy of the medical system .   I fortunately have an amazing medical support team which is wonderful but also it connects me even more.    Meaning not everything is within my control in life....and anyone who knows me knows that I like to be in control.   Well, cancer has definitely taken that away.    When I expressed my thoughts to my doctor he dashed them to the ground with a stone......but nicely!!!!

I think in many ways I go to my denial place ( read first few blogs for the stages) when I want to do things like most "normal" people.    Then he tells me the ugly details of my situation and I hit the ground way to hard and feel like screaming.   So, my plans have been dashed.........

It looks like I will need to have surgery again, but it will be a very delicate one and a long and difficult one. Chances of complications etc.   So, I have to be close at hand to these places rather than running around the world escaping from reality.    That news knocked me off my feet for a number of days......and then I decided to rethink my situation and as the old sayings goes "when given lemons, make lemonade" so that is what I am in the process of doing.   I am figuring out how to deal with the fact that I must remain close at hand and still enjoy the things I like, like wind, and water, and really fun company.

I know that in life one doesn't always get to go through the door one wants....but no matter what, I don't have to stay stuck in any place for long.....there is always a window that is open from which I can fly........I found my window and am squeezing through (its a rather narrow one) and getting ready to fly off on a new adventure despite the fact that I am chained to my present circumstances......

Will keep you posted on how the flight is..........

Reality Check ........

So I made it back.   Phew....long drive but some interesting visits and stops along the way which helped to slow the journey back to reality.   Didn't see one accident either way till about a half hour from home and then there were three in a row.    Figure it was the universes way of jolting me back into the pace and chaos of this particular part of the world.  (Minor accidents)   But I have arrived and reality has set in......the cats don't like each other anymore, and the dog is not impressed either to have to share me with other four legged creatures.  So I am trying to unpack and get myself organized while I referee the animals back in normalcy.    I guess if it isn't the children who bring you quickly back to the real world, the animals will do it.  

Other than that small glitch, it has been fun returning in many ways.   I must say there is something to be said for 'being missed'.   I had a friend bring me flowers, another corn on the cob and tomatoes, and a third more fresh veggies and an invitation to dinner.  And then finally an invitation to a jewellery party where I got lots of hugs!!!!  And that was just within a few hours of arriving home!!!!   Nothing feels better than knowing you are loved and missed.

So happy to see my daughter and believe that she has matured and grown up both physically and emotionally since I left.   She actually is 'all grown up ' as they say but for some reason I think I finally saw her this time as a young woman and not my little girl.....maybe coming over in her own car helped that image along.   

Well Thursday brings the medical reality back so I will prepare for that over the next day or so.   It always seems to bring such emotional feelings of ill at ease no matter how often you go.   The only difference I feel right now though is that I seem to have more energy to deal with it.    Not doing much for a couple of months can do that for you........

More pictures from PEI to reflect on ........

 

I wonder how many bottles where used in the making of these bottled buildings.....those are the important things I had to think about during my time away.......very reflective moments.
These are pictures from the Bottle Houses in Cape Egmont PEI......worth a trip there if you have the time....the gardens are amazing too!!!!

 

Holidays.....from illness!!

Well it is time to begin to write again.  I took a little hiatus this summer from not only writing but from all and every thing related to or about my medical issues.   I went on a "medical holiday' and I must say that it was the best thing I have done in years.

Not only did I not write one word on my blog....I don't think I even spoke, thought or dreamt about cancer for the past two or more months.    Tomorrow I begin my trek back to the real world and decided that perhaps I should ease my way back into the word of medicine and reality.  Next week I go back to the oncologist and so I am preparing myself for the feeling that comes with those regular visits.

I must say I have not been so relaxed as I have been the past few months.   I have felt like a new person and would suggest to anyone dealing with a chronic illness that taking a holiday from it may be the way to deal with it in a more effective, peaceful and even in many ways accepting fashion.   Now the key to this type of holiday is to go somewhere where no one knows you have a serious illness.   Then you don't have to deal with those 'puppy' dog eyes of very well intentioned people who ask 'and how are you doing' but you know that they are not just casually asking.....what they are saying is .....is the cancer back?   are you having treatments?   I have spent two months not having one person I have encountered ask me that question.....it was refreshing to say the least.  

So, tomorrow I head back and will be thrilled to see friends, glad to sleep in my own bed, but will take the mantle of illness back on with some reluctance............but I am probably stronger and more able to handle whatever may come my way in the coming weeks and months......

Peace and serenity have been my constant companions.........but even more so now that I am rested and rejuvenated.....

Spring.....hopefullness in nature and in life!!!!!

Spring is here!

 I can hear the birds singing, the windows are open, and soon the grass will need to be cut.   Waited all winter for this and finally I can sit outside and have my coffee.   This has got to be the best time of year.   It reminds me that everything comes back to life after its long winter sleep.  So do  our lives.   After a long and sometimes dark past few months, I am feeling like I have emerged from a dark tunnel back into the light.   My energy levels are on the rise, and my mood in general is better.    I don't know if it is a healing of the grief or if its because spring has that ability to make everything seem more alive and hopeful.

Today, as I sat outside with my coffee, I noticed a woman going by in a motorized wheel chair walking her very large Rotty.   It reminded me of a friend who does the same thing with her dog, the name escaping me but also large....a Mountain something?  Why my neighbour needs a wheelchair is unknown but isn't it wonderful that in this day and age, people who have limitations can still be as active and do such wonderful things such as walk the dog.   This Rotty runs along side at a good clip and they go round and round and round the block.   One day I will have to walk across the field and introduce myself!!!!!   My girlfriend needs her wheelchair because she has had both her legs amputated, the reasons being a whole other story.   She uses the wheelchair for the outside activities and scoots around the inside on her custom made skateboard.   She is amazing and makes me realize the human spirit, when allowed to soar, has enormous capacity to move forward and be optimistic.   At the moment she has been slowed down by another operation, but I know given time she will be up and about living her life and enjoying all her children and grandchildren.    It would be really interesting to talk to her grandchildren because they probably don't even know that she has limitations.   She is more active, has more energy, and does more than most grandmas I know.

So today, I had a nice reminder of how fortunate we are to live in a time when we can still participate in life even if all our body parts aren't working up to snuff.    There was a time when illness meant a life of complete isolation, afraid that any kind of activity would only hasten the problem.  Today, we know that positive energy, lots of stimulation, and a world that doesn't have a definite idea of what 'normal' constitutes has allowed us all to live out our potential in what ever way life as deemed necessary.  

So, I will go off to work this evening to my dream job at the yarn shop.   Another surprise!   It took me having to be diagnosed with cancer, forced to leave my full time job, to find the job that I would have never imagined I would have,   selling yarn to knitters........oh my life is so blessed!!!!

Young Carers ........

Last night while listening to CBC I heard the most interesting story.  It actually made me sad to hear it and it reminded me of a similar time in my own journey with cancer.

The topic was on young carers or to translate, children who are care givers to their parents because of illness.   I had never heard the term and was fascinated by the idea that it has become so prevalent that we have even coined a term to define the situation.   Essentially  it was the story of a young single mother who became ill very suddenly, and her children had to take care of her and the household needs during a very scary and unpredictable time.    It lasted for years.   When I was listening, my first inclination was that the mother was 'expecting' her children to look after her instead of receiving community care.   I was wrong!    She was receiving multitudes of help from PSW's and the like, but that didn't cover the whole gamut of things that needed to be done.   Her daughter was in grade 9, cooking meals, doing laundry and looking after her younger brother in addition to the personal care of her mother such as dressing, feeding, toileting etc.   One of the people that came in once a week to do house work, actually complained to the mother that her children were not doing 'enough' .   Why couldn't they clean their rooms, do their laundry, etc.   Can you believe it?   A teacher told her daughter that she was 'using her mother's illness' to get out of doing homework and handing things in on time.   So not only was it overwhelming for her daughter, she didn't even feel supported by the healthy adults in her life!!!!!   (I pray that was not the experience of my own daughter)

While listening to this and getting past my initial judgemental attitude I realized that I was defensive because it reminded me of what my life had been like when I got sick.  I like to think that I protected my young daughter from this part of the illness but in reality I know that she was expected to do more than the average child her age....if nothing but the worry of when she was at school and I was at home.   As I listened to the young girl speak of her experiences it was sad to think that in many ways my daughter too had to grown up literally over night.   When I was first diagnosed we looked into getting some housekeeping help but were told that my daughter was considered 'too old' and was able to look after herself and the house.  I was upset about this but when you are barely able to shit and shower you can't take on the community access bureaucracy too.   So we muddled through.  The young daughter's , description of how she felt, where she felt that she got support and where she didn't made me understand more fully what my own daughter had gone through.

Not all of it was bad.   The young woman did say that she was happy that she could be of help to her mother during this time and that she felt proud of what she had done and how she had grown up to appreciate things more because of it.   Yet, there were still scars!  My own daughter and I have often talked about how different things would have been and the things that we wouldn't wish differently because of how close we are because of that experience.   Yet, it saddens me to think of how it affected her life and impacted her teenage years.

Illness affects more than just the patient.    Illness disrupts lives in many ways and more so when there is only one adult in the household to look after things.   When that person becomes ill the tasks fall to the children in the home.  One of the fears the mother on the radio expressed was that she was afraid that if she tried to get too much help that perhaps it would be determined that the children should be removed from the home.   OMG, when I heard that my heart went out to her.   That is one thing that never ever occurred to me.   I am so glad I was obviously naive enough that I never thought that might happened.   This woman had worked in mental health as a social worker, so her fears were not unfounded.  

It was very enlightening to hear this documentary.   It was also difficult and sad to hear it.  I don't think I ever really thought that my daughter was a 'young carer'' but in reality she was.   Especially on those nights when her mom (me) was so sick I couldn't even get out of bed or fend for myself.   She was alone looking after me.......how that must have been  frightening and scary for a young girl of twelve.    Thank God we made it through that time and seemed to have come out the other end, a little scarred but blessed to appreciate each other every day! :)

Hmmmmm.....how did you see that?????

Have you ever thought about what your life would have been like if something major had not taken place to direct it the way it has.   I do!   It is something that I have often thought of , especially since I was diagnosed with cancer.    It is sort of a 'what if' but not in a way of mourning that loss, just in a way of thinking what would have been different.   Most times I can't really find anything of any great regret as although I would not wish this journey, I have learnt to accept it and what it has brought to my life.   What I find most interesting is how other people seem to have thought there life would be different if I hadn't gotten sick.    I will relate a funny story about that.

As I have mentioned in previous posts I have a daughter who was quite young when I became sick.  At this point she has lived with the cloud of cancer over her mother's head as long she lived without it.  Recently, she told me about how she feels she missed out on things as a teenagers because of my illness.  I had often thought of this and felt a little sad because of it, but it wasn't exactly in the same line of thinking as she.    One of the things that she felt she missed out on was the 'hanging out' with friends.   She related to me that many of her friends had hung out at the mall or downtown and that she was never able to do that because of my illness.    I looked at her and said "you think that is the reason you were never allowed to hang out on street corners and in malls?"    I began to laugh and said "if that makes you feel better about that loss, you keep thinking it, but even if I had been well you wouldn't have 'hung out' aimlessly anywhere!!!!!"

The look on her face was priceless.   All these years she had blamed my illness and so was content to believe that her teenage years had been less than her friends because of it.    I didn't get any of the blame!    I often say that the teenage years with her were much calmer and relaxed than most of my friends, and now I know why.    She thought the differences in ability to do things was because of the cancer, not because her mother wouldn't allow it.     It is always interesting to see how someone else thinks about a situation.   Who would have thought that cancer was my 'out' to the terrible teenage years you hear about.   

So, when looking back to see how my life may have turned out without cancer, this is one situation which I can actually say I am glad that I didn't have to go through fighting and screaming about "everyone else can do it" with my teenager.    It is always good to reflect, but it is always good to ask others their perspective.......you just might be surprised how they saw a similar situation!!!!

Today.....all we really have!

I will attempt to write today, but my hands are freezing.   Although the weather is much warmer than it has been, this winter seems like it will never end.    Going to Florida in March was very nice but I think it makes it that much harder to endure the remainder of winter here in Canada.   Although, the weather wasn't extremely warm down south.....it all becomes relative when you come from the Great White North!!!!    The temperatures were in the 60's and 70's F and I went to the pool everyday.  Some days I was the only one there, or at least the only one in the pool.  I thought the pool was warmer than the air considering it was 86 degrees F.   In the end, a good time was had, the drive back was uneventful (the way you like drives) and it was a nice break from the monotony of snow and cold.

I haven't really felt like writing much since I returned.  I found that I was not nearly as tired when I was down South and feel that perhaps some of the tiredness is more due to a lack of purpose and action.   What I think is I might be 'bored'.   I hate that word and I don't use it lightly but while I was away I didn't feel nearly as lethargic and weary as I had during the months previous.    I had things to do, I went for walks, I swam, I knit, I read.   This lead me to reflect that perhaps I need to keep busy at home in a similar way.   Thus, I have been too busy to write!!!!!  

The events on Monday at the Boston Marathon though gave me reason to pause.  Life is so precious and so unpredictable.    We worry about so many things that we think we can control and then something like that happens and we realize that we have no control.   Who would have thought that attending a run might be a dangerous endeavour ?   Especially the parents of an eight year old boy.  My heart goes out to everyone affected that day, but that particular little boy sits heavy on my heart.
At least the fear I have comes from a disease, not some act of terrorism that randomly kills and maims innocents.    Such a cowardly and evil act!    I just sit and count my blessings that my daughter is alive and well TODAY!   That's all we have in the end.....today.    Love those around you T|ODA|Y.    Plan for tomorrow but LIVE for today.     I learnt that lesson many years ago but I still must remind myself of it constantly.

Yesterday, something happened that allowed me to remind another of that exact fact.  It was actually funny but in many ways jarred her a little.    A friend and I were having dinner and talking about illness and people who had died from different things.   She started to say how heart disease seemed to be so prevalent in her family and that she figured that if she continued in a similar vein as her relatives  she would live only to about 75......she looked at me and said..."that means I only have about 16 years left of life"....to which I replied "or you could die tomorrow".   She just stared at me and then said "oh that's a nice thought".    I said yea but its true.  You are worrying about having 16 years to live....think about it we all only have today.       It was a very stark reality but in the end she said  "you know that makes me feel much better" and we both had a good laugh.

So live today, love today, hug someone today, and hope that tomorrow you can do the same.