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|Sunday, October 16, 2016, 4:51:20 AM- Something I want you to rethink...|
This has been on my mind for the past few months. Actually since I started this journey you have to be sick of hearing about. I will not say this is the final thing you will hear me say on the subject but it is one that has had me alternately stewing about and becoming very angry with.
It was brought back to the forefront the other night by a comment that was left on my status post.
I want you to rethink the next time you chose to say some one is "battling with cancer"
It is not a battle. That implies that you have chosen sides. You have taken up a cause that you feel strongly about. It implies competition.
In reality nothing is further from the truth. From the moment you are diagnosed you submit. You have no choice. You submit to tests. surgeries, treatments. You submit to the very diagnosis itself. You submit to the drugs, the side effects and a reality you had no idea existed. You submit to needles being stuck in your veins over and over and are grateful if you are lucky enough to get away without a picc line or port and if you have to have those you are grateful to escape the pain that was being caused by those needles.
You become accustomed to the indignities your body endures because your body has betrayed you and all you want is to feel normal. You submit because there is always someone who is submitting to much worse than what you are dealing with.
You submit because someone tells you they are sending their best wishes and you wish you were in a position to do the same.
There is no battle about it.
What may be perceived as a battle is submission. The willingness to accept at this point inevitable and to deal with it as positively as possible. That positive attitude may be inherent or it maybe a result of the now massive medical team that surrounds and treats you as not a mystery but as a sentient being that deserves to understand exactly what is going on.
What you may think is a battle is actually a very long series of times when you just have to say I can get thru this. It will only take 15 mins, 4 hrs, a week, 2 weeks or longer then I can be myself or a close proximity of.
You submit because you do not want to let the people around you who are staring at you like you are a bomb about ready to go off fall apart. You submit because damn it no matter how shitty things may have seemed they weren't all that bad and you just want to live for just a lil bit longer to see...to do. You submit and you tell others that are just starting on their journey not to worry because worrying is a waste of time.
Right now I am lucky. Very incredibly fucking lucky.
But I want you to understand. There is no battle. That is a misnomer. What there really are a bunch of bewildered people just trying to figure out what the hell just happened and making the best of it in many cases just so you do not fall apart.
Brave. Yes! Warriors probably not. Adaptable. Definitely.
Cancer is not the only disease that affects lives so drastically.It just happens to be the one that strikes the most fear possible because there are so many variables to the disease but there are so many others that are living, yes living with a disease that is just as confusing that deserve the same kind of respect.
I had to get this out.
|Tuesday, September 6, 2016, 11:30:22 PM- I got the job!|
It is going to be more hours than I had anticipated but with the way things are, treatment and camping plans, I am going to be weaned into it. I have 2 shifts this week, 2 the next and then a week off before I get back in the full swing of things. First impression...they seem nice.
Now I can start thinking about making those nebulous travel plans a reality.
Looking forward to being back in the saddle,
|Friday, September 2, 2016, 1:13:12 AM- The more things change|
The more they remain the same. Some smart ass said that.
When it rains it pours. Another smart ass said that.
In the past week I have gotten visits, texts and calls from people I have not heard from in weeks, even months.
For the most part that has been a good thing. We all have those friends that it matters not how much time passes, we pick up right where we left off. They are to be treasured. The others well I suppose we can call them the detritus of life.
I have been wanting to make some changes and have even been anxious to do so even with the limitations I have or perhaps because of them.
I got a text this morning.
I have been unemployed for almost a year now. Something that turned out to be good timing. I have been thinking about it and have been talking to those in my group of contacts about employment. I am not in a rush, I still have 2 more rounds of chemo to go. I know how it makes me feel. I know how much time it takes and have been fully prepared to wait it out.
I got a text this morning. I was told that I was wanted. I was asked to make a call.
I made that call and I have an appointment to speak to the person that could be my future boss. It is not by any stretch a glamour position but it is one that I have much experience doing.
I want this job. It is perfect for me in every way. I was asked for because of my experience and I am hoping that once I lay it on the line about all the time I will not be able to work, the advantages of hiring me will still out weigh the time I will require off.
This new boss hasn't got a clue about anything about me other than my years of experience.
Cross your fingers n shit that he realises the time I have to take off is worth more than the time it would take to train someone who hasn't got a clue.
|Thursday, August 4, 2016, 8:57:09 PM- The BEST news|
I had my pre chemo Dr. appointment today and got the results from my last biopsy, finally, and my recent CT scan. The biopsy results were yup Lymphoma which is great because I don't have to worry about it anymore. It is being treated appropriately.
The best news is the results from the CT scan.
Everything came back normal!!! :)
The grapefruit sized tumour is gone!
The Dr. was beaming when he arrived. Everything is going exactly the way it should. He told me I was doing very well! He has rescheduled my next treatment so I can camp (all we have to do is find a car now) He told me to drink a bunch of beer and put my feet up in front of the fire and gave me a fist bump :)
I still have 3 more of the monthly treatments and the every 3 months for 2 years maintenance with the resulting side effects but lemme tell ya, I am doing my happy dance.
|Saturday, July 16, 2016, 2:52:07 AM- My strongest allies|
are the ones I hate the most at times.
They are the ones that know me the best. They are always there for me. They are the ones that I can not live without but at the same time they are the ones that remind me the most of who and what I am.
I always love them as I know they love me but at times they are so fucking annoying.
Every now and then I want to be without them for just a few minutes but those would be the loneliest minutes of my life.
I am lucky to be stuck with such assholes even though I wish they would just fuck off for about 30 seconds and then come back as if nothing ever happened.
I want to not be me but I want nothing to change.
It has been a long week,
|Thursday, July 7, 2016, 8:57:04 PM- I am so bloody excited!!|
I already had to cancel one trip this year. I was to go to Florida for 2 weeks at the beginning of June but that was shoved aside rather unceremoniously with my diagnosis.
I have another trip planned for the beginning of September to go to my favourite place on the entire planet for a few days of camping. I have not been there for a few years and have missed it terribly. My kids basically grew up there. It is the place I feel most at home and I refused to admit I may not be able to go.
Given treatment schedules, chair bookings, blood work, CTs, Dr. appointments and the inevitable shitty side effects, time is flying. So while I was in there today knowing after this cycle there is only one more until I run smack dab into the next and the trip. I asked the Dr. about it.
I knew my Dr. would help me figure something out. She has been totally amazing but she is on maternity leave now for a few months and I had no clue what this new guy was going to be like. It turns out he is awesome :) He reiterated that my lymphoma is a very slow growing one and not as time sensitive as some others and told me he would make sure I was able to camp and feel as well as possible while doing it :)
I know I am going to be tired. I know I will have to rely on the others to be my pack horses and do some of my share of the work but I get to go!!!
Looking forward to watching the sunsets over the water from my rock,
|Sunday, June 26, 2016, 1:19:35 AM- Life. The awkward side.|
I have been mulling this over for quite a while now and just couldn't figure out how to say what I wanted to without it sounding accusatory which was not at all what I intended.
Having an amazing sounding board has enabled me to gather my thoughts.
We have all had that moment when we are confronted with something that shocks/surprises/confounds us and we really haven't got a clue how to react. I have been there. We all have.
Some chose to ignore the news. Others decide the best thing to do is boost morale by telling a story they have either heard or have been part of first hand.
Neither of those reactions are going to be appreciated by the person that is going through what ever it is. Remember to them this is all new too and they are for the very first time sailing uncharted waters. They are not going to be appreciative of a long story about how so and so dealt with it because they are at the beginning of their journey. Save those stories for later when comparing battle scars. Ignoring the situation just conveys that you don't give a shit.
If you find yourself in an awkward situation like this the best thing you can do is either say point blank "I don't know what to say" or "what can I do?"
Generally you don't actually have to do anything. This isn't your journey remember? But it gives the person going through it the sense that they are not alone.
That kind of support is invaluable. I know because I have been lucky enough to have been the recipient.
|Thursday, June 9, 2016, 7:53:34 PM- Perspective|
We all know the drill. You go to the Doctor he/she lectures you about drinking, smoking, tanning, diet and everything else they possibly can think of in an attempt to keep you healthy. We all nod in agreement. Some tell the truth, some lie. We know what they are saying is in our own best interest but the lectures wear thin and off we go carrying on the way we always have or we make small changes and hope for the best.
When I had my first appointment with my hematologist we went through my treatment plan etc, etc. Then she asked if I had any questions. Of course I had several and was about to leave when I remembered to ask if I could drink. Victoria day, my birthday and a friends birthday were coming. She looked at my treatment schedule and said I should feel well enough and that she wasn't that worried about me and told me to enjoy.
Fast forward to today.
I was back in for my appointment before I go back to chemo Monday and Tuesday. Blood work had been done questions asked more treatment discussed and she said your liver results are a little high... That was when I chimed in and said could it be all the drinking I have done? and sheepishly admitted I did over do it a bit. With a grin on her face she said "I am just happy you felt well enough to drink!"
Now I know that isn't an endorsement, I have no plans to over do it again and I have been told as the treatment goes I I may not feel quite as well as I have this round but it amused the hell out of me.
|Sunday, June 5, 2016, 4:41:49 AM- Communication|
On this site we are very visual in our attempts at communication. Pictures are our primary ways to let others know who we are and even what we may be looking for. Language is secondary at first. We title our pictures and then some of us move on to chat, status, forum and then there are the PMs, many of which fail on the most basic levels and yet some of them succeed beyond our wildest dreams.
More difficult to convey are emotions. Of course we have emojis when words fail us but they are really just platitudes. A simple way to half heartedly convey our immediate reactions.
We as a species are so much more than a selection of icons that we have come to default to, to convey what we are feeling.
I have run the gamut of emotions recently and I keep coming back to this one visual, It was something that was given to me and made by hands unknown. The person or persons who made these have no idea who the recipient may be or what their story might be and that matters not. They had/have only one thing in common. They are willing to be kind without accolades.
My first thought on receiving this gift was what the hell am I going to do with it? It sits there beside me not quite large enough to cover me. It has colours and textures that appeal to me not but...
It has meaning to me.
I can hate it as much as I want but that ugly patched together itchy wanna be blanket is going to forever be etched in my mind as the visual for kindness.
|Sunday, May 22, 2016, 2:43:24 AM- I told myself I wasn't going to do this|
but it has been increasingly difficult for me because most of the time the first question people ask is "How are you?" I have been replying "Ok. How bout you?" and it has been annoying the shit out of me when I get a reply like "horrible". I want to just launch myself across cyber space and choke people until they see how trivial their shitty day has been.
I am all over the place. I am not my usual cheery self and even though I don't owe anyone an explanation I feel it will be of some benefit to me to explain.
On April 23 I was diagnosed with Lymphoma. Non Hodgkins Follicular Lymphoma to be precise.
I was numb to it. I barely reacted.
I spent a week in hospital. I was the healthiest sick person in there. I was able to come and go as I chose and eat what I felt like but I had to stay to get the tests done in a timely manner.
I will be OK. I will live for many years. I will not be cured. I will be managed.
I started chemo this past Monday.
I did not sleep for 5 days solid. Side effects are wonderful.
I have overcome my darkest fear (needles) and am now injecting myself daily with Fragmin a blood thinner.
I am, right now, doing better than I really have any right to emotionally but and this is the reason for this blog. I am going to have my moments. Today, I have realised this is more than I am going to be able to deal with non chalantly.
I am going to be tired, bitchy, angry.
I am brave but kindness has been my undoing. I have been bursting into tears at the slightest bit of sympathy. I have gotten unreasonably angry at the woes of the world. I am not the me I have been in the past. I am a new me.
The new me does not want pity. It is my reality and quite frankly everything seems to be going quite well so far. However I reserve the right to change my mood at the drop of a hat. This new me... the cancer patient is going to take some to get used to.
I have 5 more months of chemo ahead of me. Then a further 2 years of every 3 months after that. That is my foreseeable future. It may change. It may get better or worse.
It is far from sexy.
I have been blessed. (I will use that word even though I am far from any religion) to have a few very close friends on here who have been with me right from the initial trip to the hospital.
This is a journey only I can take but having company along the way is making it far easier.
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