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.
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
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
Tuesday 7 April 2015
Why do posts have to have names? It's annoying.
I was diagnosed 4 years, three months and 1 week ago. They always talk about five year survival.
Will I survive five years? I have no idea. At the moment it could be months or years depending on whether or not any treatment works. I am so scared it might be months, but find it so hard to even comprehend cause I feel totally fine. Any time I get sick though I think "Is this it?" I worry i'm getting sick because my cancer has spread and i'm not going to get better. That's what's going to happen one day, out of the blue... and I can't, no matter how hard I try, prepare myself for that. I think at the end a calm acceptance will take over (after the blind panic).. but I just wish i could come to terms with it now and stop worrying about it.
Instead of focusing on that though i just want to focus on LIVING. Is that wrong? To ignore it an get on with life while i'm living? I'm not sure. Health is not the absence of disease but the presence of vitality and overwhelming wellbeing!!
Loving planning my trip to the hebrides just now to do our sponsored cycle.. we have raised £2,500 so far which is unbelievable. I'm mostly looking forward to the time away with my beautiful family and the beauty of the western isles. Hoping to spot some special birds. I also can't wait to get ringing this year.. breeding season is upon us and I can't wait to hold those beautiful wild creatures again. The ospreys, owls and eagles have returned to their nests and it's shaping up to be a good summer :)
xx
Will I survive five years? I have no idea. At the moment it could be months or years depending on whether or not any treatment works. I am so scared it might be months, but find it so hard to even comprehend cause I feel totally fine. Any time I get sick though I think "Is this it?" I worry i'm getting sick because my cancer has spread and i'm not going to get better. That's what's going to happen one day, out of the blue... and I can't, no matter how hard I try, prepare myself for that. I think at the end a calm acceptance will take over (after the blind panic).. but I just wish i could come to terms with it now and stop worrying about it.
Instead of focusing on that though i just want to focus on LIVING. Is that wrong? To ignore it an get on with life while i'm living? I'm not sure. Health is not the absence of disease but the presence of vitality and overwhelming wellbeing!!
Loving planning my trip to the hebrides just now to do our sponsored cycle.. we have raised £2,500 so far which is unbelievable. I'm mostly looking forward to the time away with my beautiful family and the beauty of the western isles. Hoping to spot some special birds. I also can't wait to get ringing this year.. breeding season is upon us and I can't wait to hold those beautiful wild creatures again. The ospreys, owls and eagles have returned to their nests and it's shaping up to be a good summer :)
xx
Tuesday 31 March 2015
Fundraising and the generosity of people make me happy.
So, we've decided that to raise some funds for Sarcoma UK we will get the whole Whyte clan (myself, Davy, Robin and even Beren the dog) to cycle the Hebridean Way. This will take us through the western isles from South Uist through Benbecula, North Uist, Harris and Lewis. I've always wanted to do some island hopping and we haven't yet planned a holiday for the family so it will get three birds with the one stone. It should be an amazing experience and will feel SO good to raise some cash for the future benefit or sarcoma patients. My just giving page is here if you can spare anything: https://www.justgiving.com/Michelle-Whyte1
I put it on my Facebook page this morning and I am totally overwhelmed by the response and money raised so far. Some from people i've never met. PEOPLE ARE AMAZING!
This is serving as a great distraction, the planning and training for the trip. I've stopped rubbing my back and thinking I can feel the lump return every five minutes which is good :) I have been on votrient for four weeks now, another two months and I'll get the scan to see if it's doing anything. I feel ok at the moment but i know the last couple of weeks are going to be pretty crazy.
I really want to make more of an effort to combat stress. When i'm stressed it comes out in various strange ways. I don't immediately realise that i'm stressed, so when tiny insignificant things start getting to me and I make a big deal out of nothing I am convinced it's not me in the wrong. It sucks cause it means those closest to me bare the brunt of it and that sucks. The people who mean most to me suffer most because I can't deal with being terminally ill. As if it affecting my life isn't enough. That's one thing I really hate about having cancer, the impact it has on people I love. I feel guilty about making other people sad. I wish I was a stronger person who dealt with things better. I keep telling myself it's not too late to change... and then not changing. Some of the things I want to try, to help me channel my energy, are; keeping a diary, meditation (i find this SO hard), more exercise, and more time being productive. I think I should aim for ONE of these things each day. So... we shall see..
:)
I put it on my Facebook page this morning and I am totally overwhelmed by the response and money raised so far. Some from people i've never met. PEOPLE ARE AMAZING!
This is serving as a great distraction, the planning and training for the trip. I've stopped rubbing my back and thinking I can feel the lump return every five minutes which is good :) I have been on votrient for four weeks now, another two months and I'll get the scan to see if it's doing anything. I feel ok at the moment but i know the last couple of weeks are going to be pretty crazy.
I really want to make more of an effort to combat stress. When i'm stressed it comes out in various strange ways. I don't immediately realise that i'm stressed, so when tiny insignificant things start getting to me and I make a big deal out of nothing I am convinced it's not me in the wrong. It sucks cause it means those closest to me bare the brunt of it and that sucks. The people who mean most to me suffer most because I can't deal with being terminally ill. As if it affecting my life isn't enough. That's one thing I really hate about having cancer, the impact it has on people I love. I feel guilty about making other people sad. I wish I was a stronger person who dealt with things better. I keep telling myself it's not too late to change... and then not changing. Some of the things I want to try, to help me channel my energy, are; keeping a diary, meditation (i find this SO hard), more exercise, and more time being productive. I think I should aim for ONE of these things each day. So... we shall see..
:)
Wednesday 18 March 2015
LIFE is amazing... and crap and weird.
So... I have cancer. It sucks SO MUCH.
I also have possibly the best husband ever and a beautiful, understanding, caring and mental son. And my absolute dream job! Like today I chased deer around the beautiful mountains and loch sides in loch lomond and the trossachs in a HELICOPTER! It was like a james bond movie except with deer. We were doing massive nose dives, flying side ways and everything. Then we landed and I went to check the owl boxes and hugged some beautiful owls and found the first eggs of the season.
MY LIFE IS AMAZING! Which makes is all the harder to come to terms with the fact it's going to be shorter than the average life and I won't get to see my son grow up and share all these experiences with him. But i can't help but feel like even a short life as cool as mine is better than most.
I am very very very very very very afraid of being really sick (in front of my son and not being able to look after him) and dying. And it breaks my heart to think I can't be there for him growing up. But what we have is amazing and we are all blessed. I know his Dad can totally live up to the challenge of being mum and dad so i know he'll be fine without me, it's more of a selfish worry, cause I'M missing out. I go from feeling unbelievably grateful to utterly hard done by in a matter of minutes. But i know in the grand scheme of things... it's nothing. Just another tiny person on this massive planet. Life could have been much tougher, i've had it pretty good and I need to concentrate on that.
BUT I DON'T WANT TO DIE YET. I want to be old :( (not now, I mean i want to get old)
This post is going nowhere. It's just my irrational thoughts.
Here's some pictures of my work today.
I also have possibly the best husband ever and a beautiful, understanding, caring and mental son. And my absolute dream job! Like today I chased deer around the beautiful mountains and loch sides in loch lomond and the trossachs in a HELICOPTER! It was like a james bond movie except with deer. We were doing massive nose dives, flying side ways and everything. Then we landed and I went to check the owl boxes and hugged some beautiful owls and found the first eggs of the season.
MY LIFE IS AMAZING! Which makes is all the harder to come to terms with the fact it's going to be shorter than the average life and I won't get to see my son grow up and share all these experiences with him. But i can't help but feel like even a short life as cool as mine is better than most.
I am very very very very very very afraid of being really sick (in front of my son and not being able to look after him) and dying. And it breaks my heart to think I can't be there for him growing up. But what we have is amazing and we are all blessed. I know his Dad can totally live up to the challenge of being mum and dad so i know he'll be fine without me, it's more of a selfish worry, cause I'M missing out. I go from feeling unbelievably grateful to utterly hard done by in a matter of minutes. But i know in the grand scheme of things... it's nothing. Just another tiny person on this massive planet. Life could have been much tougher, i've had it pretty good and I need to concentrate on that.
BUT I DON'T WANT TO DIE YET. I want to be old :( (not now, I mean i want to get old)
This post is going nowhere. It's just my irrational thoughts.
Here's some pictures of my work today.
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
And update I wrote and forgot to post a few months ago whilst incarcerated.
Well…
So Its not as clean cut as I first thought. I had a PET scan and it shows some hot spots further up my chest wall and in a lymph node in a rather risky position beside my heart (one I’d imagine Mr Kirk wouldn’t want to touch) This stuff cant be seen on a CT scan yet though, so must be small.
So change of plans and i’m having chemo, Mr Kirk (THEE best cardio thoracic surgeon in the country and possibly WORLD) is keeping quiet until he see’s how the chemo works I think. And its working great from what I can feel. the lump was pretty large, not sure the dimensions by the time i started chemo but the bit that i can feel is at least half the size. So hopefully its working on the other parts too.
The spread is strange though. Its not from my (known) positive margin area, its just the same cancer quite close to where is was before….
Anyway, I had to cancel my trip to Montreal to start chemo and thought i would squeeze in a last minute holiday for Robin before chemo has me by the balls. So we booked three days in Disneyland Paris. Probably not the brightest idea but since my first chemo was fine last time I thought it would be the same again. So a week after chemo (just when my blood counts would start getting low) we went to Disneyland. It was AMAZING (for Robin) he had the time of his life and totally made us proud as parents by just being the coolest wee laid back kid ever. Even when we tried to come home early and had to spend 8 hours in the airport he just breezed through it keeping himself entertained. We left early because i became quite unwell. I couldn't make it out the third day so davy took him on a couple of his favourite rides and then we left.
I had to go straight from the airport to A&E (my cancer hospital doesn't take admissions at the weekend) and i’ve been kept in to get intravenous antibiotics. I feel a bit better but am still going from soaking with sweat to shivering.. not sure which one i prefer. I’ve only been in 18 hours though so i’m sure i’m on the mend. Should be in for a few days. Missing my Gucci cancer hospital.. the local hospital it a bit of a dive and you can tell the staff here aren’t as worried about infection and everything being super sterile (i guess they’re not as used to dealing with neutropenic patients)
So, I shall be spending the foreseeable future lying low and washing my hands as much as possible. Hope I haven’t put my oncologist off giving me chemo as it worked so well.
Over and Out
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