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.
Wednesday, 14 September 2011
The story so far.. August 2011
Started radiotherapy, almost finished my six week course - sick and reeeeeeaaally tired! Hardest bit so far. (Getting 45gy to a field that covers half my chest from my clavicle to the top of my stomach. Then a boost of 9gy to both positive margin areas. I read a paper about radiotherpy to treat positive margins with sarcoma and it seems quite effective. Although significantly better if the dose is above 65gy but i think 45gy is the maximum you can get at your spine.)
Bought a campervan with our wedding money :oD As soon as my side affects start wearing off we're off to the outer hebrides to try it out!
Bought a campervan with our wedding money :oD As soon as my side affects start wearing off we're off to the outer hebrides to try it out!
Thursday, 1 September 2011
The story so far.. July 2011
The recovery was really fast at first. Every day I was going a little further and slowly coming off my pain killers. Three weeks after my operation I played the last ever Kings of Macumba gig on the main stage at the Wickerman festival. I didn't think i'd make it, I'm so glad I did! We couldn't hang about at the festival for long though because I couldn't walk far and was still in quite a bit of pain.
I'm the odd one out cause I got there too late to put my top on and crept up behind the band just in time to start playing..
The recovery has slowed right down recently though, the pain is the same every day. Although I feel capable of walking much further and for longer the pain in my back and ribs gets in the way which is quite frustrating. Although, I'd be in this pain for the rest of my life, gladly, if it meant I got to live to an old age! Still though, I can't help but have a wee moan and feel quite sad about the position we're all in. Most of the time we're happy and having a laugh together!
The recovery has slowed right down recently though, the pain is the same every day. Although I feel capable of walking much further and for longer the pain in my back and ribs gets in the way which is quite frustrating. Although, I'd be in this pain for the rest of my life, gladly, if it meant I got to live to an old age! Still though, I can't help but have a wee moan and feel quite sad about the position we're all in. Most of the time we're happy and having a laugh together!
The story so far.. June 2011
Followed by a couple of weeks at home feeling fine and being a proper mum :)
My friends from Lewis came to stay the night before I had to go into hospital for my operation which was great for taking my mind off it. The night I was in the hospital Mr Kirk came in and explained how he might just "open and close" and not be able to do anything. Or hr might be able to debulk it, but hopefully he'll be able to remove in completely, in which case he'll have to take my whole lung. I'm not sure why, but i'd convinced myself he was going to take it out and all we had to worry about was whether or not the margins were clear. So when he left I was upset and worried again.
The next morning everything happened really quickly and I woke up feeling like i'd been hit by a car. I asked if it was gone and the nurse said yes. I was really out of it and I vaguely remember hearing Davys voice. I told him I loved him, he said something about Robin and I smiled, then I threw up a few times and went back to sleep. Mr Kirk came in at some point and said he took all the visible tumour, my whole lung, my pleura and some of my diaphragm but that I got to keep all my ribs! He said he couldn't get the desired margin in two areas but the radiotherapy should take care of that - Once again, the best case scenario!
:)
The story so far.. May 2011
So I got my hickman line out and another one in. It was an epic TWO HOURS of shoving fat dilators down my vein with no success. Eventually they got it in the left side, but when I went to get my second last chemo it never worked, so I had to get it through my hand and get the f00ker out anyway. THEN when I went to get it out, it worked!! So I'm getting my final chemo through it now. WOOOOOP!! After a really nice two weeks at home just being a mum and forgetting about chemo.
However I got some AMAZING news... my fatty boom batty of a tumour, much to my surprise, has lost enough weight to become operable!!!!!!!! We are now in what was described as 'the best case scenario' when I was diagnosed. There's a chance I could be cancer free by the end of this year. I really felt like all hope was lost (except for the chance of the oil working) because of how big it was. There was no chance of chemo and radiotherapy getting rid of it completely. I'm delighted I don't need to come to terms with that realisation because I was really finding it difficult.
Instead of cancer being the end of my life it might be the beginning of a more self aware journey through life. Best of all, i'll be around for Robins birthday!!
HAPPY DAZE!!!
I met with Mr Kirk (the best cardiothoracic surgeon on the planet!!.. i hope) And he said that if I was as old as my old maw he would have said no to the operation. However, since i'm only 25 and nothing else can be done he's going to give it his best shot. He said he'll probably have to take at least four of my ribs and some of my lung, perhaps even the whole thing.. eeek! He said he'll do it on the 29th of June as I told him I was going to Islay with my friends and he said he thinks that a really important part of the recovery process.
Aaaaanyway! I have just had my final dose of doxirubicin (the cardiotoxic one) and i'm currently having my final dose of ifosfamide (the one thats made from mustard gas and can make you infertile) WOOHOO!!
I'll get home on friday and my friend natasha has organised a charity doo for me on the saturday. So if I don't feel too bad I can party with all my friends at that. What wonderful friends I have :) I really can't believe how lucky I am to have met the friends I have now and to have such an amazing husband. All of them make me want to be a better person when I see all their individual qualities shine through. And Davy, well he's just the best person I've ever met, I can't believe he chose ME as his wife. Despite the whole cancer thing.. I feel so lucky!! LOVE, LOVE, LOVE!!
So, I'll have six weeks of freedom between my last chemo and my operation. Three weeks recovering from chemo then 10 days in Islay!! Cannot wait! Then i'll squeeze in what normal family time I can before the op. I reckon I wont be able to lift Robin for a while after it so I might not get to feed, bath and put him to bed for a while :( That sucks, but if it means I get more time with him in the long run then hey ho - lets go!
CONEHEAD!!
Instead of cancer being the end of my life it might be the beginning of a more self aware journey through life. Best of all, i'll be around for Robins birthday!!
HAPPY DAZE!!!
I met with Mr Kirk (the best cardiothoracic surgeon on the planet!!.. i hope) And he said that if I was as old as my old maw he would have said no to the operation. However, since i'm only 25 and nothing else can be done he's going to give it his best shot. He said he'll probably have to take at least four of my ribs and some of my lung, perhaps even the whole thing.. eeek! He said he'll do it on the 29th of June as I told him I was going to Islay with my friends and he said he thinks that a really important part of the recovery process.
Aaaaanyway! I have just had my final dose of doxirubicin (the cardiotoxic one) and i'm currently having my final dose of ifosfamide (the one thats made from mustard gas and can make you infertile) WOOHOO!!
I'll get home on friday and my friend natasha has organised a charity doo for me on the saturday. So if I don't feel too bad I can party with all my friends at that. What wonderful friends I have :) I really can't believe how lucky I am to have met the friends I have now and to have such an amazing husband. All of them make me want to be a better person when I see all their individual qualities shine through. And Davy, well he's just the best person I've ever met, I can't believe he chose ME as his wife. Despite the whole cancer thing.. I feel so lucky!! LOVE, LOVE, LOVE!!
So, I'll have six weeks of freedom between my last chemo and my operation. Three weeks recovering from chemo then 10 days in Islay!! Cannot wait! Then i'll squeeze in what normal family time I can before the op. I reckon I wont be able to lift Robin for a while after it so I might not get to feed, bath and put him to bed for a while :( That sucks, but if it means I get more time with him in the long run then hey ho - lets go!
CONEHEAD!!
Tuesday, 30 August 2011
The story so far.. April 2011
Two days later they get the results from my cultures and it's quite an aggressive infection so they change the antibiotics which means I need to stay in for another five days to get it through my line :(
I've been coping ok cause I know it's for the best and I want to get better and keep getting chemo, but it's really starting to wear thin now. The thing that gets me most is missing out on Robins bedtime routine, I really love bathing him, feeding him, watching him get all sleepy and soothing him to sleep. Also, i'm missing all his morning smiles, he always smiles most in the morning.
5/4/11
I'm just feeling really down at the moment because I got a copy of my CT results. I have a blood clot in my gammy lung, i'm not too worried or bothered about this because it's tiny and i'm pretty sure i'll get rid of it with the fragmin injections. What IS worrying me is reading about how much my tumour has decreased in size. I never really realised how big it was until now, from the x rays I thought it was about the size of an orange. The fact it has decreased in size by more than half doesn't seem so great now that I know there's still a 15.2 x 12.5 x 4.6 cm tumour in there. Also it appears the angle it shows on an x ray is the bit that is decreasing the most so I was under the impression the chemo was working much better than it really is. The most important bit is the length and breadth on my chest wall as this is the bit that I believe causes the surgeon problems and the reason it is inoperable. It appears the length has only decreased by 2cm, so I don't feel as hopeful now that the surgeon might change his mind.
I'm just feeling really down at the moment because I got a copy of my CT results. I have a blood clot in my gammy lung, i'm not too worried or bothered about this because it's tiny and i'm pretty sure i'll get rid of it with the fragmin injections. What IS worrying me is reading about how much my tumour has decreased in size. I never really realised how big it was until now, from the x rays I thought it was about the size of an orange. The fact it has decreased in size by more than half doesn't seem so great now that I know there's still a 15.2 x 12.5 x 4.6 cm tumour in there. Also it appears the angle it shows on an x ray is the bit that is decreasing the most so I was under the impression the chemo was working much better than it really is. The most important bit is the length and breadth on my chest wall as this is the bit that I believe causes the surgeon problems and the reason it is inoperable. It appears the length has only decreased by 2cm, so I don't feel as hopeful now that the surgeon might change his mind.
Buuuuuut, the reality is I don't have a clue and so my medical opinion isn't worth much, therefore I may as well just enjoy life while I wait to find out. Although that's not so easy when you're stuck in a tiny wee room away from your family attached to a machine that alarms all night long for no apparent reason.
Some days i'm just gonna feel really bummed out and today is one of 'em. I think after spending a week in hospital despite feeling fine ad then getting some bad news it's allowed. Although I was a total grumpy bugger to Davy and my family and they definitely don't deserve that. I just felt really upset about everything and I don't want to show them i'm afraid i'm going to die and it's upsetting me because then they'll be upset. So it comes out as anger and I just told them all to leave me alone. I couldn't tell my mum what I had found out about today because she feels so good about how we thought the chemo had been working. I tell Davy everything though.
I just need to remember how lucky I am to have such a wonderful husband and son. That's the most important thing, that is my here and now and it brings me endless joy! :) One day soon we'll be back out in the countryside together again and this will all be irrelevant. I can't wait!
7/4/11
Today I will be mostly focusing on being positive. Otherwise I will lose my mind completely after finding out that my seven day incarceration has been for nothing as they are now going to take my hickman line out and replace it anyway!
I just need to remember how lucky I am to have such a wonderful husband and son. That's the most important thing, that is my here and now and it brings me endless joy! :) One day soon we'll be back out in the countryside together again and this will all be irrelevant. I can't wait!
7/4/11
Today I will be mostly focusing on being positive. Otherwise I will lose my mind completely after finding out that my seven day incarceration has been for nothing as they are now going to take my hickman line out and replace it anyway!
Tuesday, 16 August 2011
The story so far.. March 2011
Chemo, feeling crap, chemo, feeling crapper, blood transfusion, Chemo.. BIRTHDAY PARTY! Good friends and good times.
The x ray I got after my last chemo in March played on my mind a lot as the tumour didn't look much smaller. My oncologist said it might slow down a little towards the end and it appears that's what's happening. It worries me a bit and I think about how long I'll have left again.. will it just start growing really fast again as soon as the chemo is done?? ARGH!
I get home for two days after this cycle and then wake up shivering like mad. I try to heat myself up by drinking hot water and I take some paracetamol. I really don't want to go back in after only two days at home with my boys. My temperature peaks at 39 and I know I need to go in :( Turns out I've got an infection in my hickman line, so I get some antibiotics and they monitor my temp which doesn't spike again..
The x ray I got after my last chemo in March played on my mind a lot as the tumour didn't look much smaller. My oncologist said it might slow down a little towards the end and it appears that's what's happening. It worries me a bit and I think about how long I'll have left again.. will it just start growing really fast again as soon as the chemo is done?? ARGH!
"It's better to conquer yourself than to win a thousand battles.
Then the victory is yours, it cannot be taken from you,
not by angels or daemons, heaven or hell."
I get home for two days after this cycle and then wake up shivering like mad. I try to heat myself up by drinking hot water and I take some paracetamol. I really don't want to go back in after only two days at home with my boys. My temperature peaks at 39 and I know I need to go in :( Turns out I've got an infection in my hickman line, so I get some antibiotics and they monitor my temp which doesn't spike again..
Sunday, 14 August 2011
The story so far.. February 2011
Cycle no.2 again isn't too bad. We have the most wonderful registrar Kate. She always takes a lot of time to answer our questions in great detail.
I have my hickman line inserted for this cycle. This wasn't pleasant at all, they had quite a bit of trouble getting the dilaters down my vein and it took a bit longer than usual. I know it will be worth it though as there will be much less needles involved in my treatment. Once it's in I go for an x ray to check it's position. As I leave the room I catch a glimpse of my x ray on the computer screen. I'm pretty sure it looks like my tumour is smaller as it's not pushing on my windpipe anymore, in fact I think it looks like it's about 15mm or more away from my windpipe. A smile creeps over my face as I tell Davy what I think I saw.
When we arrive back to my room Kate is in there and she has a massive smile on her face. She says "Do you want some good news?" and I know I was right about it getting smaller. We both let out a couple of excited squeals and she shows us the x ray beside the one I had in january. It appears to have reduced a good wee chunk in all directions :) My chemo is working!!! There was a 50/50 chance it would work and it is!! And it looks like it's working really well, after only once cycle. I measure how much it has reduced with my finger and then take five more of them off the tumour and it's gone, if the chemo works that well every time there would be no tumour left at then end! Maybe they were wrong and chemo will cure it....? :oD
I have my hickman line inserted for this cycle. This wasn't pleasant at all, they had quite a bit of trouble getting the dilaters down my vein and it took a bit longer than usual. I know it will be worth it though as there will be much less needles involved in my treatment. Once it's in I go for an x ray to check it's position. As I leave the room I catch a glimpse of my x ray on the computer screen. I'm pretty sure it looks like my tumour is smaller as it's not pushing on my windpipe anymore, in fact I think it looks like it's about 15mm or more away from my windpipe. A smile creeps over my face as I tell Davy what I think I saw.
When we arrive back to my room Kate is in there and she has a massive smile on her face. She says "Do you want some good news?" and I know I was right about it getting smaller. We both let out a couple of excited squeals and she shows us the x ray beside the one I had in january. It appears to have reduced a good wee chunk in all directions :) My chemo is working!!! There was a 50/50 chance it would work and it is!! And it looks like it's working really well, after only once cycle. I measure how much it has reduced with my finger and then take five more of them off the tumour and it's gone, if the chemo works that well every time there would be no tumour left at then end! Maybe they were wrong and chemo will cure it....? :oD
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