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.
Tuesday 17 March 2015
HELLO WORLD! (again)
I'm back.. and fully intend to update my blog (again). I intend to do a lot of thing but mostly sit around talking nonsense and playing with Robin.
Well, I recovered from my infection that I got after our amazing but ridiculously timed trip to disneyland. After that I decided to stay in a lot and be super careful about getting any infections, wash my hands a million times a day and avoid contact with all humans and only kiss Robin as his kisses are worth an infection. It scared me a bit when I was in hospital and my heart rate was 130. I managed to see out the rest of my chemo with no more infections. I had ifosfamide until December. I met with my surgeon, he told me the surgery would be possible as long as the chemo took care of the very small bit beside my heart. He said he'd have to take at least three ribs and would graft some muscle and skin from elsewhere. My onc seemed positive it would be gone as the chemo had worked so well on the large tumour.
So after finishing chemo I had another PET scan. It showed that the activity in the lymph node was gone (hooray!) BUT my surgeon said that they could now see that the recurrence was far more extensive than they first thought and after much consideration as deliberation with other surgeons he concluded that he could not perform a curative surgery and therefore so no point in reducing my quality of life by doing such an invasive surgery if it wasn't going to cure me. So... it's inoperable. SHIT!
I was then given the choice of three treatments which I could apply for funding for (pazopanib, trabectedin and some other one that man ti'd have to stay in hospital sometimes and could only get six doses so I forgot about that one). They said to think more about my quality of life rather than quantity so I opted for a multi kinase inhibitor that is taken as a tablet at home (pazopanib), which means no hickman lines, hospital stays or super nasty side effects. It's not often successful with sarcomas (it's primarily for kidney cancer) but sometimes can keep tumours stable for various lengths of time. One patient at my clinic has been on it for two years.... that would be amazing :)
I'm not sure how big my tumour is now, I know it's pressing on my liver but not in a serious way. I have no lump on the outside that i can feel at all after the ifosfamide.
I've been on Pazopanib for just over a week now and so far the side effects are fine, so fingers crossed it continues like that and it works!
I have started a just giving page for Sarcoma UK. Since sarcoma is such a rare cancer there isn't as much research put in to it as other cancers. Sarcoma UK give research grants to many people studying this disease and possible treatments. Right now they are funding a study in to the drug I am on to better understand how it works with sarcoma and why it is only successful some of the time. If you would like to donate to this charity please see my just giving page. It would mean so much to me and Sarcoma UK. Hopefully in the future, someone with this disease will stand a better chance of beating it with more treatment options being available. My page is here: https://www.justgiving.com/Michelle-Whyte1/
Bye for now xx
Well, I recovered from my infection that I got after our amazing but ridiculously timed trip to disneyland. After that I decided to stay in a lot and be super careful about getting any infections, wash my hands a million times a day and avoid contact with all humans and only kiss Robin as his kisses are worth an infection. It scared me a bit when I was in hospital and my heart rate was 130. I managed to see out the rest of my chemo with no more infections. I had ifosfamide until December. I met with my surgeon, he told me the surgery would be possible as long as the chemo took care of the very small bit beside my heart. He said he'd have to take at least three ribs and would graft some muscle and skin from elsewhere. My onc seemed positive it would be gone as the chemo had worked so well on the large tumour.
So after finishing chemo I had another PET scan. It showed that the activity in the lymph node was gone (hooray!) BUT my surgeon said that they could now see that the recurrence was far more extensive than they first thought and after much consideration as deliberation with other surgeons he concluded that he could not perform a curative surgery and therefore so no point in reducing my quality of life by doing such an invasive surgery if it wasn't going to cure me. So... it's inoperable. SHIT!
I was then given the choice of three treatments which I could apply for funding for (pazopanib, trabectedin and some other one that man ti'd have to stay in hospital sometimes and could only get six doses so I forgot about that one). They said to think more about my quality of life rather than quantity so I opted for a multi kinase inhibitor that is taken as a tablet at home (pazopanib), which means no hickman lines, hospital stays or super nasty side effects. It's not often successful with sarcomas (it's primarily for kidney cancer) but sometimes can keep tumours stable for various lengths of time. One patient at my clinic has been on it for two years.... that would be amazing :)
I'm not sure how big my tumour is now, I know it's pressing on my liver but not in a serious way. I have no lump on the outside that i can feel at all after the ifosfamide.
I've been on Pazopanib for just over a week now and so far the side effects are fine, so fingers crossed it continues like that and it works!
I have started a just giving page for Sarcoma UK. Since sarcoma is such a rare cancer there isn't as much research put in to it as other cancers. Sarcoma UK give research grants to many people studying this disease and possible treatments. Right now they are funding a study in to the drug I am on to better understand how it works with sarcoma and why it is only successful some of the time. If you would like to donate to this charity please see my just giving page. It would mean so much to me and Sarcoma UK. Hopefully in the future, someone with this disease will stand a better chance of beating it with more treatment options being available. My page is here: https://www.justgiving.com/Michelle-Whyte1/
Bye for now xx
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