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 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
The story so far.. January 2011
We decide that we should get married before I get sick from the chemo and while I still have my hair. So we talk to some friends at a buddhist retreat centre up north and they tell us we can us their place on the 29th. So we have three weeks to get everything sorted. This is great as it keeps us occupied and keeps me excited.
I have my first chemo cycle and it doesn't seem too bad. I'm really wheezing on the first day though, so they take an x ray and it turns out the tumour is pushing on my windpipe. SHIT! They give me steroids and the wheezing calms down. I feel a bit sick after this cycle but it passes and my bloods are fine. My wedding will be about 3 weeks after my chemo so i'm hoping I'll still have my hair, most people in the hospital reckon I will. I have reeeeaally long hair, i'm not really a girly girl and I dont wear make up or anything but i've always loved my hair!
We plan and execute the most perfect wedding in three weeks. We take our immediate family and closest friends to stay up north for a night. We have a humanist ceremony in the "tufty" (a small wooden building with one side all glass which looks out over inverness from a good viewpoint on the hill). Afterwards we have a wonderful meal and then return to the tufty for some music and shenanigans. We then all go back to the hotel and drink into the wee hours. It feels so great to really let my hair down with my friends for the first time since I got pregnant. I feel great! Talking about letting my hair down though.. it started coming out in clumps the night before the wedding, so I have to cancel my appointment with the hairdresser but my sister manages to hide the matted bit at the back and it doesn't look too bad. As soon as the ceremony is over I stick my hat on so I don't have to keep pulling clumps out. The next morning I have a few bald patches round the front. If we'd got married a day later..
We get home the day after the wedding and Davy has to shave my head. I'd imagined doing this with some friends and trying out some funny hair styles in the process. It was just the two of us though and my hair was so matted it was really hard to shave it.. so there was no funny hairstyles or light heartedness just the two of us and a lot of tears. I was so scared to go and look when he was finished. I really didn't think something as trivial as my hair would affect me this much, I still don't know why it did. Maybe it just brought it all home, that this was really happening because until then I didn't feel or look like I was unwell. Davy took my hand and led me to the mirror, I could only look for a second before I buried my head in his shoulder and said "It doesn't look like me." I quickly got over it though and got a few nice hats.. it was winter time anyway!
The next day it was time to go back in for cycle no.2!
Thursday 11 August 2011
The story so far.. December 2010
One fine winters day i'm stratifying woodland at loch katrine and I constantly need to stop and rest because of the pain in my chest. That night the pain is quite bad and my breathing is laboured. I decide to phone the maternity unit at the hospital I'm going to have my baby at as the lung specialist at the other hospital made it clear I should grin and bear it till after the baby was born unless it got any worse. So i figure they can just make sure I have enough oxygen in my blood for the baby and make sure the baby is doing ok. They tell me to come in and my oxygen levels are fine as is the baby. Although they are slightly worried as my symptoms are similar to that of a blood clot in the lung. They send me for another x ray and it seems the mass has grown substantially so I am referred to the lung specialist at this hospital. She immediately gets me in for a biopsy, which was not invasive at all and I have no idea why this wasn't done in September. They tell me no one thinks I have cancer as it doesn't look like cancer but they just want to be on the safe side.
A week later I get called in to go and get the results. My mum insists on coming so mum, Davy and me all go together. When we go into her office I see her hands shaking and my heart sinks. I know smoking can give you unsteady hands but i'm pretty sure a lung specialist wouldn't be a smoker, I reckon she's nervous cause she's about to deliver a devastating blow to my world. She tells me they "think" it's cancer, a rare kind and so it\s being sent somewhere else to confirm. I think i'm in shock. I don't have time to take it though as she goes on to explain that I'll have to have my baby so they can start treatment as soon as possible. I've to go and meet one of the obstetricians to arrange coming in to get induced.
I decide to deal with one thing at a time, I dont want this to ruin my first and possibly only experience of giving birth to my child. So for now the only thing on the agenda is having a baby, and i'm excited. I've been dying to meet my baby and now I know that i'll meet it in the next few days. I get to go home for the night to pack my bag and come back in tomorrow to start the process.
On the way into the hospital Davy tricks me into taking a walk in the snow despite being late, gets down on his knee and asks me to marry him :) It takes a couple of days to get me going as Robin just wasn't ready to come out, after 12 hours of induced labour I end up getting a cesarean section. At 19:40 on the 20th of December 2010 we hear Robins voice for the first time and life just got a whole lot better. I ride the high for the next few days and keep putting everything else to the back of my mind. It constantly creeps forward but I just keep shoving it back, one thing at a time.
So now I've to go to the cancer hospital to meet with the sarcoma specialist to discuss my situation. They say I can go on the 23rd of December or the following thursday. I decide to leave dealing with cancer till after christmas as I'd just like to have a nice first christmas with my new family.
I'm really glad I did because on the 30th of December I was told that I had a very large, aggressive synovial sarcoma in the pleura of my right lung. Unfortunately due to it's size and my past pleurodesis it is inoperable and it's unlikely that chemotherapy or radiotherapy will get rid of it. "So basically it's terminal and it's just a case of buying some time?" I ask, and she says yes. I feel unusually calm and I say to Davy that we'll just need to go home and figure out the best way of dealing with this. They offer me palliative care which I accept as I want as much time with Robin as possible. So i've to start chemo as soon as my cesarean wound heals. She tells me there is a 50% chance the chemo will have an affect.
Davy asks what the best case scenario would be and she tells us that if the chemo works well she will send the CT scans after the 2nd, 4th and 6th cycles to the cardiothoracic surgeon and he may decide he can operate. So that is what we're aiming for.
I leave that tiny room with my fiance and my 10 day old son and all I can think about is what can I do to make him remember me, or feel like he knows me a little. What can I leave behind or put in place. I think about one of our friends who lost his mum to cancer and I decide to go and meet his dad to ask about how they dealt with it.
I'm 24, I just had my first child, I just got engaged and now i'm dying.
The story so far.. September 2010
It's September, I'm at work and feeling pretty breathless and I have a pain in my shoulder which feels too much like when my lung collapsed a couple of years back. I'm five months pregnant though and working on the chainsaw all day so I figure it's just a mixture of hard graft and my uterus pushing on my diaphragm. I decide it's time to stop felling tree's till after the baby is born and start taking it easy at work.
The pain and discomfort doesn't really go away. I'm pretty sure my lung has collapsed which is strange because I had a pleurodesis two years ago after a series of spontaneous pneumothorax. The next day I go to the hospital and get a chest x-ray, the doctor comes back and says "The good new is your lung hasn't collapsed but there is something in there." "Something more sinister?" I ask and he smiles and says it's probably just some scar tissue or fluid from my operation. So I have an appointment to see the lung specialist who says she hasn't seen anything like it before, but is reluctant to give me a biopsy because i'm pregnant so she opts for an MRI. I make the stupid mistake of searching for "shadow in lung post pleurodesis" on google and read a story of a man who's talc pleurodesis caused cancer in his pleural space and he died four months later. My head is all over the place now and I'm getting upset. From the MRI she says she is "99.9% sure it's benign" So i've just to see how I get on with my pregnancy and we will deal with it afterwards. Phew!!
A week later I wake in the middle of the night in quite severe pain and each breath inward causes a sharp pain across my shoulder. I pace my room telling my boyfriend "something is really wrong." The next morning I call the lung specialist and she says if it's not worse than it's been before then I should grin and bare it as they'll just give me another x ray which isn't good for the baby. I struggle to decide whether the pain is worse than before or not and in the end I stay at home.
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