A few people suggested I start a blog after I was diagnosed. Mostly because it's a good way to vent and it means you can look back and see how far you've come and how things have improved. I Agree that writing your thoughts down is an excellent way to vent frustrations without moaning to loved ones, it's also a good way of putting order into your thoughts to help you think clearly when you're head seems to have too much flying around in it all at once!
However, I didn't see the point in a blog as I felt it was a personal thing to do and no one else need be concerned with it. Instead I bought a lovely little leather bound notebook and i've been keeping my notes in there.
Since then, I've realised why a blog is a good idea. Whilst searching for hope on the internet I came across a few blogs of people who have been battling synovial sarcomas. The positive attitude and courage in some of these people when facing what they have to face has inspired me and lifted my spirits so many times now. I always thought my story was a bit too doom and gloom to bring to anyone's attention as most people are looking for success stories. I feel now that with all the twists and turns, my story is worth telling as it might give others hope and strength to stay strong and carry on when the outlook is bleak!
I've just started what I think is the final stage of my treatment, hence the 'better late than never'.. So I shall summarise the whole escapade and see how it pans out.
Friday 18 July 2014
The benefits of being the worlds biggest pessimist...
So.... I'm a pessimist of the highest order. Always thinking of the worst case scenario. It pays off.
Yesterday I went to get my scan results. After a few days of not coping well I felt unusually calm, perhaps glad I would know the score and could plan ahead.
We got there, the onc said "unfortunately there's something that needs further investigation and looks suspicious" I asked (my worst case scenario) "do I have lung mets?"... "Ehh, no, not that I can see" BRAW!! It's not end game.
But this tumour is about the size of an orange, or or more like an avocado... It's grown near my positive margins. It's not near any major organs so my oncologist reckons that mr kirk (my superhero, the best cardio thoracic surgeon in the uk) will cut it out. I'll probably lose a couple of ribs and need some thigh or bum fat (which I'm working on) for a skin graft.
ANYWAY! This is such a better outlook than my original diagnosis so I feel confident I can overcome it if he cuts it out. I just can't wait to know what the plan is,should hopefully find out in a week or two.
Let's see... I think I can beat this (be spared by the almighty disease) twice.
x
Yesterday I went to get my scan results. After a few days of not coping well I felt unusually calm, perhaps glad I would know the score and could plan ahead.
We got there, the onc said "unfortunately there's something that needs further investigation and looks suspicious" I asked (my worst case scenario) "do I have lung mets?"... "Ehh, no, not that I can see" BRAW!! It's not end game.
But this tumour is about the size of an orange, or or more like an avocado... It's grown near my positive margins. It's not near any major organs so my oncologist reckons that mr kirk (my superhero, the best cardio thoracic surgeon in the uk) will cut it out. I'll probably lose a couple of ribs and need some thigh or bum fat (which I'm working on) for a skin graft.
ANYWAY! This is such a better outlook than my original diagnosis so I feel confident I can overcome it if he cuts it out. I just can't wait to know what the plan is,should hopefully find out in a week or two.
Let's see... I think I can beat this (be spared by the almighty disease) twice.
x
Monday 14 July 2014
Hello world!
I have been too quiet. I've started a million posts about feelings and all sorts. But nothing on the cancer front as it's been quiet, and for me that's all this blog is about. Not about Michelle Whyte as a person and my day to day activities and feelings. In short.. I go through long periods of feeling like life is normal and planning for the future (more kids, training in work etc) with the odd cancer related freak out in between. I even got pregnant at one point although unfortunately (or fortunately?) it never made it past seven weeks. Not long after.. I was lying in bed with robin, the light of my life, and we were so squished I was almost hugging myself when I felt a lump about the size of a tangerine (but not protruding as much). I was half way through a story.. And I said "and then... And then ehhh... And then they all went home and had hot chocolate and went to bed, the end." Robin was a bit confused at the crappy ending but I kissed him and came downstairs and half crying and hyperventilating told Davy what I'd discovered. He cried for a second then did his usual "me man, me take charge of situation." Thing and gave me two options.. See the doctor on Monday (it's Saturday) or go to out of hours emergency. I did the latter, my reasoning being; they will not be able to tell if it's cancer but they could possibly find out if it isn't... I was wrong but still feel like I made the right choice. They contacted my oncologist and gave me some pills to calm me down and help me sleep. So I talked to my onc on the Monday, she said much as I expected "it's a lump, I have no idea what it is from feeling it. Surgery can do funny things to your body, create scar tissue etc, we'll need a scan to figure this out". I think had it been near my scar or drain site I would feel a little more at ease, but it's near neither. Down at the bottom of my ribs on my back near where the positive margins on my diaphragm are. But who knows? So I had a scan two weeks later and I'm waiting on the results. As far as my uninformed mind sees it I have three outcomes... 1. It's looks like fluid, nothing to worry about (doesn't feel like fluid) or something along those miracle lines. 2. It's a solid mass, could be scar tissue or cancer, we will have to do a biopsy (another two weeks?) 3. You have lung mets (explains my three week long cough) and the lump looks suspicious and will need a biopsy and YOU'RE SCREWED, DO YOUR BUCKET LIST NOW!
How do I feel? Numb. Manic. Guilty.
I broke down at first. I felt overwhelming guilt for not making the most of life after surviving a terminal diagnosis. Then I returned to my general state of numb depression where I get by without thinking too much about life and the negative possibilities. Don't get me wrong, my life is WONDERFUL! I have a beautiful and amazing family, I have the best job I think there is (I got that part time job and it more amazing than I imagined). But I have kind of been floating through it in a mix of worry/ sadness/ appreciative heaven. I feel like a near death experience should leave you with a carpe diem attitude... Not me though.. I just felt quite scared and lost my confidence. I appreciated much more of the little things in life and savoured every moment with my son. But still.. I could have been more active, been a better wife and mother, made a better effort.. But I spent a lot of time worrying and feeling sad about my fear of recurrence. What a waste. Kind of. It was also awesome. I had some amazing camping trips, holidays etc with my family and friends(which I think I appreciated the most because of my past). I also became a trainee ringer and had the priveledge of holding barn owls, tawny owls, ospreys, kites, buzzards, tits, redstarts, swallows, swifts etc.... How many people get to do that? I also brought robin along and he got to do the same because my bosses are wonderful souls! (Although he couldn't have been less interested but I'm sure he'll appreciate the pictures when he's older)
So here I am.. Wanting to spend all my time either watching my boy or making sure I leave some stuff behind (crocheting blankets, making photo albums) as he won't remember me if I die soon.
Let's see what tomorrow brings. The one plus to being a pessimist is you often end up please toy surprised or prepared for bad news.
Sorry to come back on such a bummer.
How do I feel? Numb. Manic. Guilty.
I broke down at first. I felt overwhelming guilt for not making the most of life after surviving a terminal diagnosis. Then I returned to my general state of numb depression where I get by without thinking too much about life and the negative possibilities. Don't get me wrong, my life is WONDERFUL! I have a beautiful and amazing family, I have the best job I think there is (I got that part time job and it more amazing than I imagined). But I have kind of been floating through it in a mix of worry/ sadness/ appreciative heaven. I feel like a near death experience should leave you with a carpe diem attitude... Not me though.. I just felt quite scared and lost my confidence. I appreciated much more of the little things in life and savoured every moment with my son. But still.. I could have been more active, been a better wife and mother, made a better effort.. But I spent a lot of time worrying and feeling sad about my fear of recurrence. What a waste. Kind of. It was also awesome. I had some amazing camping trips, holidays etc with my family and friends(which I think I appreciated the most because of my past). I also became a trainee ringer and had the priveledge of holding barn owls, tawny owls, ospreys, kites, buzzards, tits, redstarts, swallows, swifts etc.... How many people get to do that? I also brought robin along and he got to do the same because my bosses are wonderful souls! (Although he couldn't have been less interested but I'm sure he'll appreciate the pictures when he's older)
So here I am.. Wanting to spend all my time either watching my boy or making sure I leave some stuff behind (crocheting blankets, making photo albums) as he won't remember me if I die soon.
Let's see what tomorrow brings. The one plus to being a pessimist is you often end up please toy surprised or prepared for bad news.
Sorry to come back on such a bummer.
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