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
Tuesday 12 January 2016
Scanxiety.
It's that time again. I got my appointments through. Had an MRI today and i'm having a CT on Thursday. Hoping to get my results a week on Thursday so we can take off just after. Is it just me or do you feel aches/pains/differences more... so much more... around scan time? I should write it down, the stuff I freak out about as i'm sure it's always the same. "I have this weird feeling in my chest, I don't usually have that!" always seems to be my chat around scan time. Hopefully, once again, it's just in my mind.
I often feel like i'm dealing with things alright. Then when i'm waiting on results I start thinking about how "this can't be the one where it's spread, i've still got loads to do!" At some point it IS going to be the one where it's spread, or the dormant bits are growing again, and i'm not going to have a lot of time. I really need to get prepared. It's hard to feel like preparing for death is a high priority because I feel fine (to an extent). But, like what happens to a lot of people, all of a sudden things will change. No matter how unprepared I am and what I still "have" to do. I think i'll try and spend one hour a day doing the things I want to do before it's too late. Finish making the big blanket, make some more family albums, write the letters I need to write. The main thing I want to do though is enjoy my time and spend it with Robin, but the other things are important too and I need to remember that. Those things will be all that are left for him as the memories won't last, he's too little. I was thinking today about how my nana died when I was around 12 and I can hardly remember her. I remember funny little things like how she clicked her nails, but I can't remember HER, or anything we did, or how she spoke. Robin is only five. So its important to take time out to try and leave something for him. My good friend who lost his mum when he was little told me the thing that is dearest to him is her diary, because he can't remember her and It's a way to get to know her. He loves the bits where she mentions him. I don't keep a diary, I should!
Here's something that heart breakingly funny... So I read a lot about whether or not you should speak to a five year old about having a terminal illness and the general consensus is yes. So i did. I told Robin that just now we're keeping my cancer at bay but its a smart disease and one day it will figure out how to grow again and there won't be any other medicine I can try. He asked if I would die and I said yes. I told him I felt sad I couldn't be there for him growing up but that he'd have daddy who is super cool and loving. Robin tells me "That's ok mummy, when you die Daddy will marry someone else and I'll get a new mum."Haha... thanks wee man. To be fair I'm glad he wasn't upset, but I also felt a bit put out! (not seriously, he's five!). He has a rugrats DVD about a kid who doesn't have a mum and its all about his dad meeting a nice new woman so he can have a mum so i'm guessing that's where he got it from! To be fair though, I hope Davy does meet someone that will grow to love Robin, so that he has a woman in his life growing up. Someone who cares about him and loves him like a mother. Some of my friends are step mums and their step sons are lucky to have them. I can only hope Robin is that lucky!
Roll on next thursday so I know the score and I can hopefully get excited about our trip. The dog has his doggy passport, the van is almost complete. We're good to go... just need a route... or do we?
M x
I often feel like i'm dealing with things alright. Then when i'm waiting on results I start thinking about how "this can't be the one where it's spread, i've still got loads to do!" At some point it IS going to be the one where it's spread, or the dormant bits are growing again, and i'm not going to have a lot of time. I really need to get prepared. It's hard to feel like preparing for death is a high priority because I feel fine (to an extent). But, like what happens to a lot of people, all of a sudden things will change. No matter how unprepared I am and what I still "have" to do. I think i'll try and spend one hour a day doing the things I want to do before it's too late. Finish making the big blanket, make some more family albums, write the letters I need to write. The main thing I want to do though is enjoy my time and spend it with Robin, but the other things are important too and I need to remember that. Those things will be all that are left for him as the memories won't last, he's too little. I was thinking today about how my nana died when I was around 12 and I can hardly remember her. I remember funny little things like how she clicked her nails, but I can't remember HER, or anything we did, or how she spoke. Robin is only five. So its important to take time out to try and leave something for him. My good friend who lost his mum when he was little told me the thing that is dearest to him is her diary, because he can't remember her and It's a way to get to know her. He loves the bits where she mentions him. I don't keep a diary, I should!
Here's something that heart breakingly funny... So I read a lot about whether or not you should speak to a five year old about having a terminal illness and the general consensus is yes. So i did. I told Robin that just now we're keeping my cancer at bay but its a smart disease and one day it will figure out how to grow again and there won't be any other medicine I can try. He asked if I would die and I said yes. I told him I felt sad I couldn't be there for him growing up but that he'd have daddy who is super cool and loving. Robin tells me "That's ok mummy, when you die Daddy will marry someone else and I'll get a new mum."Haha... thanks wee man. To be fair I'm glad he wasn't upset, but I also felt a bit put out! (not seriously, he's five!). He has a rugrats DVD about a kid who doesn't have a mum and its all about his dad meeting a nice new woman so he can have a mum so i'm guessing that's where he got it from! To be fair though, I hope Davy does meet someone that will grow to love Robin, so that he has a woman in his life growing up. Someone who cares about him and loves him like a mother. Some of my friends are step mums and their step sons are lucky to have them. I can only hope Robin is that lucky!
Roll on next thursday so I know the score and I can hopefully get excited about our trip. The dog has his doggy passport, the van is almost complete. We're good to go... just need a route... or do we?
M x
Monday 4 January 2016
Ok, enough break, can I have a scan please.
I'd love to say I enjoyed my christmas "break"... well I did I suppose. We got a house up north with our families and spent some time with our friends and it was all good. Most importantly Robin had probably the best christmas ever because his cousins were there to share the level with him. So for that i'm very pleased. I think my family enjoyed it too. For me.. robins birthday/christmas/new year (like I said in the last post) are a weird time for me. I find it hard to feel happy. Its when all this shit started and its also a time that really makes me think "is this the last birthday/christmas/new year we'll spend together?" So i'm glad it's over and its back to just normal days that we're not expected to be overjoyed about. However... as christmas and birthdays go, they were good ones for all involved I reckon. I'm just having a hard time due to the aforementioned crap and the fact i'm in limbo again... the worst place to be with cancer! I don't know how my radiotherapy worked, i don't know what (if any) options I have next, I don't know where and how big my cancer is... and i'm losing the plot! I've to get scans... well now I think but i've had no appointment through. And all of the above is making me CRAZY!!! I've been really down, in a dark place twice in my life.. i can't remember when the first time was i just remember thinking "fucking hell, i didn't realise you could get this low".. and the second time is now. Like crying in the car, shower (anywhere no one see's) and acting-like-a-fucking-psycho-and-trying-to-blame-others-cause-i'm-fine" kind of low. (only in front of my poor husband davy though). I am not dealing with. this. shit! I'm lost and numb. The worst part is... I'm AWARE of what an ass i'm being. I know this is a massive waste of time and energy and since life is so fleeting i should be making the most of the little time i have, being grateful, rejoicing, immersing myself in LIFE. But i'm not. I'm staying in all day, keeping my mind otherwise occupied with documentaries and useless crap. And i know what i'm doing is wrong and pointless.. but still, I'm not fixing it. Which just makes me feel like an ever bigger ass.
Five years of this bullshit makes it all wear thin. I'm sure i'll pick myself up soon.. I always do. And despite the above failings... I still count me blessings every day, feel like i'd rather live 29 years in this life than 89 in any other, relish every moment of my bedtime stories with Robin, look at the sky and feel absolutely blessed to be on earth... and all that jazz! I just feel a bit sad too at the moment.
Here's hoping my appointments come in soon and being good news. I'm hoping to drive to italy in my van through holland, germany, switzerland and france if i get good results. How amazing would that be for the soul? A few weeks together with no tv, no internet seeing europe in winter? If all goes well with the scans I'll leave in three weeks so we can celebrate our five year anniversary on the road :)
Inshallah - as they say in arabic.
P.S Robin can go his bike like a BOSS! coolest dude ever.
Five years of this bullshit makes it all wear thin. I'm sure i'll pick myself up soon.. I always do. And despite the above failings... I still count me blessings every day, feel like i'd rather live 29 years in this life than 89 in any other, relish every moment of my bedtime stories with Robin, look at the sky and feel absolutely blessed to be on earth... and all that jazz! I just feel a bit sad too at the moment.
Here's hoping my appointments come in soon and being good news. I'm hoping to drive to italy in my van through holland, germany, switzerland and france if i get good results. How amazing would that be for the soul? A few weeks together with no tv, no internet seeing europe in winter? If all goes well with the scans I'll leave in three weeks so we can celebrate our five year anniversary on the road :)
Inshallah - as they say in arabic.
P.S Robin can go his bike like a BOSS! coolest dude ever.
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