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.
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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