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.
Sunday, 20 December 2015
A break.
So radiotherapy has stopped. I'm tired. I'm pleased my lump is a lot smaller. I'm also occasionally freaking out about my dwindling options and the thought of having to decide its time to just go with it. But mostly, I'm looking forward to doing my best to forget about cancer, lumps, dying and all that jazz for a few weeks over the christmas holidays. I'm heading up north to the Cairngorms with my family, my sisters family, my parents and my in laws to spend christmas in a big house together. I think this will be great for my son, to share christmas with his cousins and get all excited together like I did with my siblings. I feel bad he doesn't get to experience that being an only child. If cancer had never been a part of my life I reckon he'd have at least one brother or sister by now :) I guess if cancer hadn't been a part of my life I also wouldn't appreciate all the little things about our time together as much as I do now. No point on dwelling on these thoughts too much cause I do have cancer.. and I still have and have had a wonderful life.
It's been a good year despite having another lodger or two in my chest.. the breeding season left a lot to be desired but I ringed my first golden eagle and even a sea eagle!! I cycled the hebrides and raised over £8000 for sarcoma UK, I had the best holiday of my life in Iceland, A great holiday staying in a cave for two weeks on the isle of islay, flew in a helicopter round the scottish mountains, Robin had his first ever birthday party (today, total success/mayhem). His birthday and christmas is always a weird time for me, its when all this shit kicked off 5 years ago. 5 years ago yesterday I was told I had cancer. 5 years ago next thursday I found out it was terminal. 5 years ago tomorrow I met my son for the first time and from that moment on I had something beautiful to focus on throughout the tough times that lay ahead.
Here's a few snaps of Iceland..
It's been a good year despite having another lodger or two in my chest.. the breeding season left a lot to be desired but I ringed my first golden eagle and even a sea eagle!! I cycled the hebrides and raised over £8000 for sarcoma UK, I had the best holiday of my life in Iceland, A great holiday staying in a cave for two weeks on the isle of islay, flew in a helicopter round the scottish mountains, Robin had his first ever birthday party (today, total success/mayhem). His birthday and christmas is always a weird time for me, its when all this shit kicked off 5 years ago. 5 years ago yesterday I was told I had cancer. 5 years ago next thursday I found out it was terminal. 5 years ago tomorrow I met my son for the first time and from that moment on I had something beautiful to focus on throughout the tough times that lay ahead.
Here's a few snaps of Iceland..
Saturday, 28 November 2015
Stuck between death and a dead place.
Decisions - it's so hard to make a decision when the the only certainty of every outcome is death. Although I suppose really.. Death is the only thing anyone can be certain about in life. But, yeah, it's hard to decide. Do I try chemo that may or may not be effective for some extra time? Do I stop treatment and let my fast growing tumour grow in to my liver, stomach and spine? Do I risk the surgery which has a higher mortality rate than I'd like even though I have stable cancer elsewhere that could potentially kick off at any point after the surgery? I want surgery, but i think I have blinkers on. I’ve always wanted surgery because its generally been the only hope of a cure until they found out I had cancerous cells elsewhere so there is no cure… Maybe it’s not the wisest decision now. If it went well.. and the other cancer remained stable, I could potentially get another couple of years out of it. If my tumour was growing as fast as it was before I started radio, I wouldn’t have long left at all, so I'd quite like to get it out.. please, thank you!
I met with my oncologist to get bloods and check my skin etc.. everything seems fine. Then she went to say bye so I said "I take it you didn't hear from Mr Kirk then?" .... "well actually I did, he's hard to get a straight answer from. He says things like "this surgery has a high mortality rate." Then said something like "But I'll do it if we need to." This didn't really answer anything for me. Although He didn't say no which was good, I said that to my onc and she just sort of made a face. She's very aloof about it all. I think it's her that needs convincing more than him. I think I need to meet with him to discuss it and make an informed decision!
Anyway. Too many choices. For now I choose life.
x
P.S. My tumour is a lot smaller since starting radiotherapy! :oD
I met with my oncologist to get bloods and check my skin etc.. everything seems fine. Then she went to say bye so I said "I take it you didn't hear from Mr Kirk then?" .... "well actually I did, he's hard to get a straight answer from. He says things like "this surgery has a high mortality rate." Then said something like "But I'll do it if we need to." This didn't really answer anything for me. Although He didn't say no which was good, I said that to my onc and she just sort of made a face. She's very aloof about it all. I think it's her that needs convincing more than him. I think I need to meet with him to discuss it and make an informed decision!
Anyway. Too many choices. For now I choose life.
x
P.S. My tumour is a lot smaller since starting radiotherapy! :oD
Friday, 20 November 2015
Next step..
So the latest next step is radiotherapy.
I really hope it does something. My tumour was on the inside last time, now that I can feel it growing on the outside its quite scary, to watch it grow and know I'm not doing anything to stop it. As of yesterday we started RT so I feel a little better we're doing something. Although I'm not sure what we're aiming for and what the likeliness of achieving it is... my guess is we're aiming for stability/slowing and I'm hoping the odds are high it'll have an effect. I just feel good to know that SOMETHING is happening, as it grows so fast and is pushing on my liver and not too far from my spine.
In other news, my oncologist agreed to talk to my surgeon again. I'm not getting my hopes up about it at all (well maybe a little). I just asked if he would consider having a go as everything else was stable and this big blob is going to kill me. So can't we just take it out? Its bigger than when he said he 'could' take it out though so who knows. I'd be losing at least four ribs but thats what he said before. Anyway, thats a turn up for the books :)
Its Robins birthday next month, which will also be five years since diagnosis. Which is amazing. I remember when he was a few weeks old and they were saying it was terminal, saying, I just wish I could be here till he's five, see him go to school, hear him talk, interact with him... and i've got to do all of those things! And he might even remember me now. We've had an amazing five years and made some beautiful memories (and took some good pictures just in case he forgets). Although he's not at school, we deferred him for some extra family time, which I think we're both really happy about! But yeah, fifth birthday party organisation in full flow. We've also booked a huge house in the highlands for christmas, so we can spend it with all the family. I'm so excited about this, and very happy Robin will have some company his own age on christmas eve to get all excited with like I did with my siblings :)
Life is good. (and crap)
x
I really hope it does something. My tumour was on the inside last time, now that I can feel it growing on the outside its quite scary, to watch it grow and know I'm not doing anything to stop it. As of yesterday we started RT so I feel a little better we're doing something. Although I'm not sure what we're aiming for and what the likeliness of achieving it is... my guess is we're aiming for stability/slowing and I'm hoping the odds are high it'll have an effect. I just feel good to know that SOMETHING is happening, as it grows so fast and is pushing on my liver and not too far from my spine.
In other news, my oncologist agreed to talk to my surgeon again. I'm not getting my hopes up about it at all (well maybe a little). I just asked if he would consider having a go as everything else was stable and this big blob is going to kill me. So can't we just take it out? Its bigger than when he said he 'could' take it out though so who knows. I'd be losing at least four ribs but thats what he said before. Anyway, thats a turn up for the books :)
Its Robins birthday next month, which will also be five years since diagnosis. Which is amazing. I remember when he was a few weeks old and they were saying it was terminal, saying, I just wish I could be here till he's five, see him go to school, hear him talk, interact with him... and i've got to do all of those things! And he might even remember me now. We've had an amazing five years and made some beautiful memories (and took some good pictures just in case he forgets). Although he's not at school, we deferred him for some extra family time, which I think we're both really happy about! But yeah, fifth birthday party organisation in full flow. We've also booked a huge house in the highlands for christmas, so we can spend it with all the family. I'm so excited about this, and very happy Robin will have some company his own age on christmas eve to get all excited with like I did with my siblings :)
Life is good. (and crap)
x
Thursday, 15 October 2015
An unexpected turn..
Unfortunately the unexpected turn is not that my terminal prognosis turned around (again) and i'm actually NED. It's that the trust I had in my care at my cancer centre has suffered a dent when I found out that my tumour didn't actually shrink to the point it couldn't be measured and remain stable as I was told after my last two scans.... but that it actually only shrank by 4mm the at the first of these two scans and at the second it had actually doubled in size to 44mm.
I'm totally baffled that a mistake like that could be made! So basically, I had been told my tumour was nothing but 'thickening of the tissue' after starting pazopanib and having a great response after three months.. I then had another scan at six months and was told it was stable. At this clinic appointment I asked A LOT of questions about exactly why I couldn't have surgery and where these "hotspots" were on my PET scan. During this chat we pulled up so many scans the computer crashed. So we left it at that and I went home finding out a little more about the hotspots. I also mentioned (as i have every other time) how happy I was to know it wasn't growing as I thought I could feel the lump growing.
When I went back two weeks later to collect some drugs my oncologist said to me that she reviewed all my scans and that they have been reporting on the wrong area for the last two scans. An area of thickened tissue where my original tumour was. She said the actual tumour had definitely grown. I was blindsided by this information and didn't really ask anything. She just said to come back in six weeks as planned. And after my scans in december we could maybe arrange radiotherapy if it was growing considerably.
When I got home everything sunk in and I began to ask lots of questions. How could they make a mistake like that? How could every scan up until this point be referring to an area near my liver at the bottom of my ribs and then suddenly start looking at an area under my armpit.... and not even notice the fact there was a 4.5cm tumour in my chest wall when they are supposed to be looking for spread? This all seems to fall on the radiologist reporting my scans I suppose.
However.. my oncologist didn't seem to even know where my tumour was. She offered radiotherapy after saying before it wasn't an option because i'd already had max dose (which i had to the area where my lung used to be) This tumour is actually lower than the previous field, so I CAN have radiotherapy... I could have had it when my tumour was just 18mm.. which I assume could possibly have been more effective than treating a 44mm tumour. I'm pretty disappointed about that.
I was surprised about my oncologists reaction. Just didn't seem surprised at all and mentioned it like it wasn't a big deal. I then had to email her and ask for the scans to be re reported by a radiologist so I knew how my treatment was really working and if i should get the ball rolling with radiotherapy sooner rather than later. She then emailed me back the sizes... with nothing else on the email and it was at this point I found it it had DOUBLED in size. Why did she not think this was something I should know about? Urgently? So I then emailed saying "I think it's safe to say pazopabnib is no longer effective and that we should try radiotherapy" so she agreed and said she'd get the wheels in motion... Why the hell am I the one instigating these things?
However... aside from the radiotherapy thing.. I guess things wouldn't be much different if this massive cock up hadn't been made. The 4mm shrinkage would have been classed as a partial response and I would have continued with pazopanib until the second scan anyway. Things would have been found out and dealt with two weeks earlier at the second scan results if they'd been looking in the right place but what difference will two weeks make? Not much I'd think. So that's in the past and we're here now and all I can do is try and choose the best path from here forward. I'm just a little bummed that I don't feel as confident about my level of care. Wondering what else they could be missing? Do they actually give a shit?
Bummer the pazopanib didn't work for me... i'd really hoped it would but cést la vie!
Yours
Ranty McRanterson
I'm totally baffled that a mistake like that could be made! So basically, I had been told my tumour was nothing but 'thickening of the tissue' after starting pazopanib and having a great response after three months.. I then had another scan at six months and was told it was stable. At this clinic appointment I asked A LOT of questions about exactly why I couldn't have surgery and where these "hotspots" were on my PET scan. During this chat we pulled up so many scans the computer crashed. So we left it at that and I went home finding out a little more about the hotspots. I also mentioned (as i have every other time) how happy I was to know it wasn't growing as I thought I could feel the lump growing.
When I went back two weeks later to collect some drugs my oncologist said to me that she reviewed all my scans and that they have been reporting on the wrong area for the last two scans. An area of thickened tissue where my original tumour was. She said the actual tumour had definitely grown. I was blindsided by this information and didn't really ask anything. She just said to come back in six weeks as planned. And after my scans in december we could maybe arrange radiotherapy if it was growing considerably.
When I got home everything sunk in and I began to ask lots of questions. How could they make a mistake like that? How could every scan up until this point be referring to an area near my liver at the bottom of my ribs and then suddenly start looking at an area under my armpit.... and not even notice the fact there was a 4.5cm tumour in my chest wall when they are supposed to be looking for spread? This all seems to fall on the radiologist reporting my scans I suppose.
However.. my oncologist didn't seem to even know where my tumour was. She offered radiotherapy after saying before it wasn't an option because i'd already had max dose (which i had to the area where my lung used to be) This tumour is actually lower than the previous field, so I CAN have radiotherapy... I could have had it when my tumour was just 18mm.. which I assume could possibly have been more effective than treating a 44mm tumour. I'm pretty disappointed about that.
I was surprised about my oncologists reaction. Just didn't seem surprised at all and mentioned it like it wasn't a big deal. I then had to email her and ask for the scans to be re reported by a radiologist so I knew how my treatment was really working and if i should get the ball rolling with radiotherapy sooner rather than later. She then emailed me back the sizes... with nothing else on the email and it was at this point I found it it had DOUBLED in size. Why did she not think this was something I should know about? Urgently? So I then emailed saying "I think it's safe to say pazopabnib is no longer effective and that we should try radiotherapy" so she agreed and said she'd get the wheels in motion... Why the hell am I the one instigating these things?
However... aside from the radiotherapy thing.. I guess things wouldn't be much different if this massive cock up hadn't been made. The 4mm shrinkage would have been classed as a partial response and I would have continued with pazopanib until the second scan anyway. Things would have been found out and dealt with two weeks earlier at the second scan results if they'd been looking in the right place but what difference will two weeks make? Not much I'd think. So that's in the past and we're here now and all I can do is try and choose the best path from here forward. I'm just a little bummed that I don't feel as confident about my level of care. Wondering what else they could be missing? Do they actually give a shit?
Bummer the pazopanib didn't work for me... i'd really hoped it would but cést la vie!
Yours
Ranty McRanterson
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