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 22 January 2016
Scan results.
So I went for my scan results... convinced I had a brain tumour, heart mets, lung mets, breast cancer and something wrong with my stomach! (HA!)
Luckily... i was wrong. I have no heart tumour, my little left lung (best lung ever) is clear, brain.. well that wasn't scanned but probably clear and just suffering from so much chemo, stress.... and if i'm honest lack of exercise, and to be fair.. i've never been that bright! However, there's something in my stomach.. well my onc said there were 4mm lesions in my bowel somewhere (I can't remember where). On the scan report the radiologist suspected metastasis, my oncologist however said he wasn't confident that was what it would be. It wouldn't be unknown, but very unusual for it to spread there. He said also it was near lymph nodes and mentioned something about haemorrhaging due to my current treatment. I asked him if he was playing it down to stop me worrying until it was big enough to investigate further which i think, fairly, he took offence to and told me his job is to be truthful with patients. So he's not too worried. I am. Just have to wait and see if it grows.
Also, I have something in my breast. It's not the first time this has been mentioned, they noted it in PET scans, first time it's been mentioned in a CT though. I have a history of "breast mice" so i'm hoping its just another one of them. However, i'd went to the hospital planning to mention the discomfort i'd been feeling in my breast so, both of these together has prompted me to go for an examination. What are the chances i'd be THAT unlucky? Probably not far off the chances of having a synovial sarcoma (accounts for what, 1%of cancers?) in my pleural space (not unknown but one of the m ore uncommon places for this rare subtype of a rare cancer)... But, aye. Unlikely.
So, all in all... I saw it as good news. As far as I'm concerned lung mets are the worst case scenario. And I have none. In fact I have no confirmed mets. So I'm free to go bumming around europe in my van... to the forests, mountains, towns and cities of holland, germany, switzerland, italy and france. :)
My heart and mind are a little heavy, but i think i'll be able to push it back and have an amazing time. I think if they weren't a little heavy i'd be... in complete denial or an absolute nutter!
Next scans April.
WAIT!! SO, I don't ALWAYS look at the sarcoma forums etc, but one day I did... and someone asked about how they could determine if pleural thickening could be malignant or not. I said what about a PET (as I have pleural thickening that lights up a PET and is therefore considered to be cancer). This person then told me about a paper, which tells of numerous patients showing PLEURAL THICKENING WHICH LIGHTS UP ON PET SCANS FOR OVER TEN YEARS AFTER A TALC PLEURODESIS (causing people with pleural thickening to be wrongly suspected of having malignancies after talc pleurodesis) which her husband had had, and therefore it couldn't be determined that way. This is a massive deal to me, because i currently have an operable tumour... which will not be operated on because i have PLEURAL THICKENING LIGHTING UP ON A PET SCAN AND ASSUMED TO BE MALIGNANT which cannot be operated on. And i had TALC PLEURODESISA FEW YEARS AGO! So basically.. that pleural thickening could be nothing and my tumour could be removed.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2729238/
Moral of the story... keep up to date with the folks on forums! They know their stuff!
I mentioned it to my onc in an email about something else and he said "that's very interesting... Have a good holiday!" I'm not sure if that was sarcastic or not, ha! He must have LOADS of patients be like "i saw this/that on the internet!!" but i really think it could be relevant to my case.
Lots to think about.. for me. But for now, i've got the all clear to go on holiday. Life a day at a time. Looking forward to seeing bit of the world with my beautiful little family :) x
Luckily... i was wrong. I have no heart tumour, my little left lung (best lung ever) is clear, brain.. well that wasn't scanned but probably clear and just suffering from so much chemo, stress.... and if i'm honest lack of exercise, and to be fair.. i've never been that bright! However, there's something in my stomach.. well my onc said there were 4mm lesions in my bowel somewhere (I can't remember where). On the scan report the radiologist suspected metastasis, my oncologist however said he wasn't confident that was what it would be. It wouldn't be unknown, but very unusual for it to spread there. He said also it was near lymph nodes and mentioned something about haemorrhaging due to my current treatment. I asked him if he was playing it down to stop me worrying until it was big enough to investigate further which i think, fairly, he took offence to and told me his job is to be truthful with patients. So he's not too worried. I am. Just have to wait and see if it grows.
Also, I have something in my breast. It's not the first time this has been mentioned, they noted it in PET scans, first time it's been mentioned in a CT though. I have a history of "breast mice" so i'm hoping its just another one of them. However, i'd went to the hospital planning to mention the discomfort i'd been feeling in my breast so, both of these together has prompted me to go for an examination. What are the chances i'd be THAT unlucky? Probably not far off the chances of having a synovial sarcoma (accounts for what, 1%of cancers?) in my pleural space (not unknown but one of the m ore uncommon places for this rare subtype of a rare cancer)... But, aye. Unlikely.
So, all in all... I saw it as good news. As far as I'm concerned lung mets are the worst case scenario. And I have none. In fact I have no confirmed mets. So I'm free to go bumming around europe in my van... to the forests, mountains, towns and cities of holland, germany, switzerland, italy and france. :)
My heart and mind are a little heavy, but i think i'll be able to push it back and have an amazing time. I think if they weren't a little heavy i'd be... in complete denial or an absolute nutter!
Next scans April.
WAIT!! SO, I don't ALWAYS look at the sarcoma forums etc, but one day I did... and someone asked about how they could determine if pleural thickening could be malignant or not. I said what about a PET (as I have pleural thickening that lights up a PET and is therefore considered to be cancer). This person then told me about a paper, which tells of numerous patients showing PLEURAL THICKENING WHICH LIGHTS UP ON PET SCANS FOR OVER TEN YEARS AFTER A TALC PLEURODESIS (causing people with pleural thickening to be wrongly suspected of having malignancies after talc pleurodesis) which her husband had had, and therefore it couldn't be determined that way. This is a massive deal to me, because i currently have an operable tumour... which will not be operated on because i have PLEURAL THICKENING LIGHTING UP ON A PET SCAN AND ASSUMED TO BE MALIGNANT which cannot be operated on. And i had TALC PLEURODESISA FEW YEARS AGO! So basically.. that pleural thickening could be nothing and my tumour could be removed.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2729238/
Moral of the story... keep up to date with the folks on forums! They know their stuff!
I mentioned it to my onc in an email about something else and he said "that's very interesting... Have a good holiday!" I'm not sure if that was sarcastic or not, ha! He must have LOADS of patients be like "i saw this/that on the internet!!" but i really think it could be relevant to my case.
Lots to think about.. for me. But for now, i've got the all clear to go on holiday. Life a day at a time. Looking forward to seeing bit of the world with my beautiful little family :) x
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I am so glad to hear your results mean that you can get away in that van and have a fantastic break..I am sure it will do a great deal for you and your family i am sure.
ReplyDeleteour van is a Bongos big brother, a Granvia so not long before we are heading off as well.
On the Thickening issue, when you get back IMO push as hard as you can, don't take no for an answer...just keep getting the evidence and presenting it. As you say some forum folks really know their stuff.
Again IMO i would send another mail to your onc and say that you are serious and want that possibility discussed at the next available multidisciplinary team meeting, it needs to be on their agenda fro review. Sorry to sound a bit 'you should' but i really think you should!!
You might also say that it would be good to discuss the results of that discussion on your return from holiday...( set them a deadline....)
I am so pleased that you can have a holiday and have renewed hope for an operation.
Very best wishes from the South Coaat
Dougie
Thanks Dougie, you're right about the multi disciplinary meeting! I emailed the papers to my oncologist, so we'll see at the end of the month. I'm beginning to think maybe its wishful thinking on my part, assuming they don't already know about this. Particularly my surgeon, being a cardio thoracic surgeon he must know. So it's probably not characteristic of what I'm hoping it is. But... its definitely better to be sure!
ReplyDeleteLovely to hear from you again :) I hope you get some good trips in the van this year!