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.
Monday 28 September 2015
It's been a while.
I don't know why, I haven't felt much like writing on my blog since having cancer this time. I think it definitely helped last time so I should get in to it. Lots of things are different the second time around.. my feelings, my outlook, peoples reactions..
My tumour is operable this time, but I have cancer throughout my chest (not that it has spread to my lung or anything) and so operating on that one tumour wouldn't be curative. Last time I had one tumour that was inoperable and making it smaller seemed like an achievable goal. This time.. well to be honest I don't understand what exactly is going on for a start. My surgeon initially said he would do the surgery when i finished chemo, then after chemo I had a PET scan (which i had never had before, never got one before my last surgery or the last time i had cancer) My surgeon said "There is much more extensive recurrence throughout your chest than we first thought and therefore I do not want to reduce your quality of life with this surgery (as it would involve removing a good few ribs), when it is not going to be curative." He also said "I'd be happy to reconsider if things change". He offered to look at my scans with me and show me exactly what he meant, as we were talking on the phone.. I accepted and made an appointment but he got called into surgery and it never happened. So i'm not exactly sure where the cancer is.
I asked my Oncologist what would have to change for it to become operable and she said she doesn't think surgery would ever be an option. Last week I decided to ask exactly where the cancer was, you kind of want to know these things, even if there's nothing you can do about it. So we looked at some scans. I don't think she was entirely sure herself where the other areas were. All she knew was that treatment had been working and my tumour had been getting smaller, she didn't seem very clear on the "hot" areas on the PET. So we had a look and it looks like there's a hot area on the chest wall at the site of my original tumour (a few inches above my new one).. that was about as far as we got and then her computer crashed.. so I'll try and find out more next time. I wish i'd been able to meet my surgeon to ask him what would need to happen for him to reconsider... but so much time has passed i doubt i could make an appointment to see him now. ANYWAY, so aye.. I'm not entirely sure exactly where I have cancer. There's also pleural thickening round most of the area where my lung was.. which isn't hot on the PET, but.... is abnormal. Things are definitely more complicated and unclear this time.
HOWEVER... things have been going well. So I had chemotherapy and it worked again... despite it being my second time on the same treatment. my tumour went from 5.0 x 4.8 to 3.6 x 2.4 on ifosfamide.. then i had to wait a while to apply for funding for my new drug as it is not recommended for treatment of my cancer (its for kidney cancer) but CAN work around 8% of the time. During this break I took as much cannabis oil as I could and the tumour went from 3.6 x 2.4 to 1.8 x 2.4. I told my oncologist about the cannabis oil, he said it's hard to know if the shrinkage was to do with that OR it could be an immune response, as sometimes when you completely flatten your immune system and destroy all its memory (like with chemo) when it is building back up it can sometimes recognise the cancer and fight it a bit... so it could have been either. THEN the funding for pazopanib was approved and I stopped cannabis and started on that (they can't be taken together as cannabis can increase the amount of pazopanib in your system) hoping for it to keep the tumour stable. I got scans after the first three months and amazingly it had got smaller! In fact they didn't even give measurements and said it could only be described as pleural thickening. My oncologist explained it didn't mean that there was no tumour to measure but that it was very small and hard to differentiate where the normal tissue ended and the abnormal tissue started on the scan. So that was great news. I recently had my next scan (after six months of treatment) and its remains the same which is great. Time is flying by, I can't believe I've been on it for six months now. I remember being so excited to know that one guy had been on it for over a year and thinking it would be amazing if I could get a year out of it (as for a lot of people it works for, it only works for a few months)... i'm half way through a year, I need to remember this is borrowed time and make the most of it. It's sometimes hard to keep that at the front of my mind as I feel fine and just live life as normal. When ever I've had bad news I've got right to work making sure everything is in order and arranging, making things to leave behind... and I should definitely focus on that a lot more than I do as I might not get the chance next time I get bad news.
Last time I was on here, we were about to go on our sponsored cycle. It was absolutely amazing, we had a wonderful time on those beautiful scottish islands. My friends and family helped us raise £8,500 including gift aid for Sarcoma UK which is wonderful. On the trip we saw a white tailed sea eagle soar literally 20ft from us and a male hen harrier sky dancing beside us as we rode, which was a beautiful moment. I later got to ring a white tailed sea eagle which was unbelievable.. such a big bird! Here's a picture:
Summer has come and gone, wasn't much of a summer this year. We recently escaped to spain just to see that big orange thing in the sky that we vaguely remembered. We did however have an amazing holiday on the isle of Islay, where we camped at a cave for two weeks with lots of friends. We've camped here a few times now and it's always a magical experience. Two weeks of friends, children, food, wine and music together.. it was wonderful.
Autumn is creeping in and i'm ready for autumnal colours and getting the fire going.
It's been over five years since I first discovered my tumour now... (although i wasn't diagnosed for another three months as they thought it was benign).. five years! Maybe i'll make five year survival after diagnosis.... I hope so.. cause then I'll be here for Robins fifth birthday :)
This is a very long, and boring post. Lots of fun and wonderful stuff happened over the summer... it's just not on my mind today. I need to come here more often, during the good times :)
x
My tumour is operable this time, but I have cancer throughout my chest (not that it has spread to my lung or anything) and so operating on that one tumour wouldn't be curative. Last time I had one tumour that was inoperable and making it smaller seemed like an achievable goal. This time.. well to be honest I don't understand what exactly is going on for a start. My surgeon initially said he would do the surgery when i finished chemo, then after chemo I had a PET scan (which i had never had before, never got one before my last surgery or the last time i had cancer) My surgeon said "There is much more extensive recurrence throughout your chest than we first thought and therefore I do not want to reduce your quality of life with this surgery (as it would involve removing a good few ribs), when it is not going to be curative." He also said "I'd be happy to reconsider if things change". He offered to look at my scans with me and show me exactly what he meant, as we were talking on the phone.. I accepted and made an appointment but he got called into surgery and it never happened. So i'm not exactly sure where the cancer is.
I asked my Oncologist what would have to change for it to become operable and she said she doesn't think surgery would ever be an option. Last week I decided to ask exactly where the cancer was, you kind of want to know these things, even if there's nothing you can do about it. So we looked at some scans. I don't think she was entirely sure herself where the other areas were. All she knew was that treatment had been working and my tumour had been getting smaller, she didn't seem very clear on the "hot" areas on the PET. So we had a look and it looks like there's a hot area on the chest wall at the site of my original tumour (a few inches above my new one).. that was about as far as we got and then her computer crashed.. so I'll try and find out more next time. I wish i'd been able to meet my surgeon to ask him what would need to happen for him to reconsider... but so much time has passed i doubt i could make an appointment to see him now. ANYWAY, so aye.. I'm not entirely sure exactly where I have cancer. There's also pleural thickening round most of the area where my lung was.. which isn't hot on the PET, but.... is abnormal. Things are definitely more complicated and unclear this time.
HOWEVER... things have been going well. So I had chemotherapy and it worked again... despite it being my second time on the same treatment. my tumour went from 5.0 x 4.8 to 3.6 x 2.4 on ifosfamide.. then i had to wait a while to apply for funding for my new drug as it is not recommended for treatment of my cancer (its for kidney cancer) but CAN work around 8% of the time. During this break I took as much cannabis oil as I could and the tumour went from 3.6 x 2.4 to 1.8 x 2.4. I told my oncologist about the cannabis oil, he said it's hard to know if the shrinkage was to do with that OR it could be an immune response, as sometimes when you completely flatten your immune system and destroy all its memory (like with chemo) when it is building back up it can sometimes recognise the cancer and fight it a bit... so it could have been either. THEN the funding for pazopanib was approved and I stopped cannabis and started on that (they can't be taken together as cannabis can increase the amount of pazopanib in your system) hoping for it to keep the tumour stable. I got scans after the first three months and amazingly it had got smaller! In fact they didn't even give measurements and said it could only be described as pleural thickening. My oncologist explained it didn't mean that there was no tumour to measure but that it was very small and hard to differentiate where the normal tissue ended and the abnormal tissue started on the scan. So that was great news. I recently had my next scan (after six months of treatment) and its remains the same which is great. Time is flying by, I can't believe I've been on it for six months now. I remember being so excited to know that one guy had been on it for over a year and thinking it would be amazing if I could get a year out of it (as for a lot of people it works for, it only works for a few months)... i'm half way through a year, I need to remember this is borrowed time and make the most of it. It's sometimes hard to keep that at the front of my mind as I feel fine and just live life as normal. When ever I've had bad news I've got right to work making sure everything is in order and arranging, making things to leave behind... and I should definitely focus on that a lot more than I do as I might not get the chance next time I get bad news.
Last time I was on here, we were about to go on our sponsored cycle. It was absolutely amazing, we had a wonderful time on those beautiful scottish islands. My friends and family helped us raise £8,500 including gift aid for Sarcoma UK which is wonderful. On the trip we saw a white tailed sea eagle soar literally 20ft from us and a male hen harrier sky dancing beside us as we rode, which was a beautiful moment. I later got to ring a white tailed sea eagle which was unbelievable.. such a big bird! Here's a picture:
Robin also got to meet a lot of ospreys and a golden eagle this season which is an amazing thing to share with him in our little bit of time together :)
Summer has come and gone, wasn't much of a summer this year. We recently escaped to spain just to see that big orange thing in the sky that we vaguely remembered. We did however have an amazing holiday on the isle of Islay, where we camped at a cave for two weeks with lots of friends. We've camped here a few times now and it's always a magical experience. Two weeks of friends, children, food, wine and music together.. it was wonderful.
Autumn is creeping in and i'm ready for autumnal colours and getting the fire going.
It's been over five years since I first discovered my tumour now... (although i wasn't diagnosed for another three months as they thought it was benign).. five years! Maybe i'll make five year survival after diagnosis.... I hope so.. cause then I'll be here for Robins fifth birthday :)
This is a very long, and boring post. Lots of fun and wonderful stuff happened over the summer... it's just not on my mind today. I need to come here more often, during the good times :)
x
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