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.
Thursday 11 August 2011
The story so far.. December 2010
One fine winters day i'm stratifying woodland at loch katrine and I constantly need to stop and rest because of the pain in my chest. That night the pain is quite bad and my breathing is laboured. I decide to phone the maternity unit at the hospital I'm going to have my baby at as the lung specialist at the other hospital made it clear I should grin and bear it till after the baby was born unless it got any worse. So i figure they can just make sure I have enough oxygen in my blood for the baby and make sure the baby is doing ok. They tell me to come in and my oxygen levels are fine as is the baby. Although they are slightly worried as my symptoms are similar to that of a blood clot in the lung. They send me for another x ray and it seems the mass has grown substantially so I am referred to the lung specialist at this hospital. She immediately gets me in for a biopsy, which was not invasive at all and I have no idea why this wasn't done in September. They tell me no one thinks I have cancer as it doesn't look like cancer but they just want to be on the safe side.
A week later I get called in to go and get the results. My mum insists on coming so mum, Davy and me all go together. When we go into her office I see her hands shaking and my heart sinks. I know smoking can give you unsteady hands but i'm pretty sure a lung specialist wouldn't be a smoker, I reckon she's nervous cause she's about to deliver a devastating blow to my world. She tells me they "think" it's cancer, a rare kind and so it\s being sent somewhere else to confirm. I think i'm in shock. I don't have time to take it though as she goes on to explain that I'll have to have my baby so they can start treatment as soon as possible. I've to go and meet one of the obstetricians to arrange coming in to get induced.
I decide to deal with one thing at a time, I dont want this to ruin my first and possibly only experience of giving birth to my child. So for now the only thing on the agenda is having a baby, and i'm excited. I've been dying to meet my baby and now I know that i'll meet it in the next few days. I get to go home for the night to pack my bag and come back in tomorrow to start the process.
On the way into the hospital Davy tricks me into taking a walk in the snow despite being late, gets down on his knee and asks me to marry him :) It takes a couple of days to get me going as Robin just wasn't ready to come out, after 12 hours of induced labour I end up getting a cesarean section. At 19:40 on the 20th of December 2010 we hear Robins voice for the first time and life just got a whole lot better. I ride the high for the next few days and keep putting everything else to the back of my mind. It constantly creeps forward but I just keep shoving it back, one thing at a time.
So now I've to go to the cancer hospital to meet with the sarcoma specialist to discuss my situation. They say I can go on the 23rd of December or the following thursday. I decide to leave dealing with cancer till after christmas as I'd just like to have a nice first christmas with my new family.
I'm really glad I did because on the 30th of December I was told that I had a very large, aggressive synovial sarcoma in the pleura of my right lung. Unfortunately due to it's size and my past pleurodesis it is inoperable and it's unlikely that chemotherapy or radiotherapy will get rid of it. "So basically it's terminal and it's just a case of buying some time?" I ask, and she says yes. I feel unusually calm and I say to Davy that we'll just need to go home and figure out the best way of dealing with this. They offer me palliative care which I accept as I want as much time with Robin as possible. So i've to start chemo as soon as my cesarean wound heals. She tells me there is a 50% chance the chemo will have an affect.
Davy asks what the best case scenario would be and she tells us that if the chemo works well she will send the CT scans after the 2nd, 4th and 6th cycles to the cardiothoracic surgeon and he may decide he can operate. So that is what we're aiming for.
I leave that tiny room with my fiance and my 10 day old son and all I can think about is what can I do to make him remember me, or feel like he knows me a little. What can I leave behind or put in place. I think about one of our friends who lost his mum to cancer and I decide to go and meet his dad to ask about how they dealt with it.
I'm 24, I just had my first child, I just got engaged and now i'm dying.
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment