Sadly, this doesn't even surprise me, coming from our government. I never had any doubt they would stoop so low..

http://tompride.wordpress.com/2011/12/03/the-government-has-finally-done-something-so-outrageous-even-i-cant-be-bothered-to-satirise-it/

Please sign the petition.

It's just me and lefty against the world..

So I was kinda back at square one, in terms of getting fit and used to just having one lung, after the RT induced tiredness wore off. It's been about two months since I finished. I'm starting to get out every day walking again and I plan on doing my first one lunged munro before the year is out :)

Tomorrow is my first CT scan since my operation. I've been looking forward to it, I hope to get good results so I get a wee boost to make me EVEN MORE jolly through the chrimbo period. Although yesterday I had an uncomfortable feeling at the bottom of my ribs and today it got worse. I've learnt to not freak out about little aches and pains to much as its totally normal, but because this is where my positive margins were, my mind is running away with its self a wee bit.

But other than the odd recurrence related freak out things have been going well. Robin has learnt to clap and therefore applauds most things I do, having your own wee ripple of applause following you around as you do the daily do, feels quite nice :) He's also started giving us kisses which is possibly one of the best bits of parenthood so far. His wee cousin Maya has started kissing too, here they are kissing each other :)

Roll on tomorrow..

October 2011 - i'm finally up to date!

Radiotherapy finally came to an end. Phew!! That was definitely the hardest part so far. They said i'd get tired but I never thought i'd be THAT tired. It's been three weeks since I finished and I'm definitely getting my energy back.

We spent a week relaxing in Italy which was just what I needed. I have a bit of a holiday comedown now that i'm back in a very wet and dull Scotland. The beaches were amazing! I found that if i try and float in the sea I slowly flip over onto my face due to the whole one lung thing :) I also seen a guy on the beach with a thoracotomy scar, if he hadn't been Russian i'd love to have picked his brain about healing time.. as i'm still in quite a bit of pain when i'm mobile and i'm not sure if i should be.

So I'll have my first post op scan in a couple of weeks. After which I'll be visiting the cancer hospital every six weeks until further notice.. So i'll finally have some time to take stock of all this and really pick it apart and get my head around it. So far I've just been on the ride, holding on for dear life. My attitude and outlook constantly changing due to ever changing circumstances. I really need to have a long think about things, now that they have settled. When they said it was terminal, you can plan things and decide how to deal with it. Now I'm in a wee bit of a funny place, i don't know if I still have cancerous cells there and there's no way of finding out so it's just a waiting game.  I know that there is really only one way of dealing with things and it has a lot to do with this:

Although there are some other things i need to work on, like my confidence which seems to have taken a dunt. Most importantly though, as I have no more planned treatment i'm just going to get better and make up for all the motherly and wifely duties i've been unable to take care of... Robin wont be a daddy's boy much longer :)

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!

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 story so far.. June 2011

Had an excellent holiday with my friends. Unfortunately the weather was pretty bad the whole time on Islay. So we lasted about a week and then left, as camping in the rain with an infant isn't much fun. Islay was wonderful, was great to be back at the cave and roasting lamb in the earth oven again. I caught three fish! Robin was amazing on his first camping trip, took it all in his stride but caught a wee cold and that's primarily why we left. We went with Shaun and Emily to Tayvallich and stayed in a lovely little cottage for a while, ate lots of nice cheese and drank lots of nice wine. After that we drove to Skye and stayed in a cabin for a couple of days. We went swimming in the fairy pools in Skye which was one of the best things I have ever done!!

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!!

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.

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!

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!

"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..

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

The story so far.. January 2011

At new year we take Robin round to a friends house for some games and a party. It's great to see everyone and show off our new son! We go home in the morning and I spend a lot of time thinking about what this next year is going to bring and wonder if i'll be around for the next new year.

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!

The story so far.. December 2010

For the last couple of months i've had a constant discomfort in my chest because of the 'benign tumour'. When i'm climbing hills at work it gets worse but i'm not sure if the breathlessness is a normal symptom of pregnancy or not. I'm 8 months pregnant now.

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.