Better late than never..

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, 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.



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

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

Friday, 18 July 2014

The benefits of being the worlds biggest pessimist...

So.... I'm a pessimist of the highest order. Always thinking of the worst case scenario. It pays off.

Yesterday I went to get my scan results. After a few days of not coping well I felt unusually calm, perhaps glad I would know the score and could plan ahead.

We got there, the onc said "unfortunately there's something that needs further investigation and looks suspicious" I  asked (my worst case scenario) "do I have lung mets?"... "Ehh, no, not that I can see" BRAW!! It's not end game.

But this tumour is about the size of an orange, or or more like an avocado... It's grown near my positive margins. It's not near any major organs so my oncologist reckons that mr kirk (my superhero, the best cardio thoracic surgeon in the uk) will cut it out. I'll probably lose a couple of ribs and need some thigh or bum fat (which I'm working on) for a skin graft.

ANYWAY! This is such a better outlook than my original diagnosis so I feel confident I can overcome it if he cuts it out. I just can't wait to know what the plan is,should hopefully find out in a week or two.

Let's see... I think I can beat this (be spared by the almighty disease) twice.

x

Monday, 14 July 2014

Hello world!

I have been too quiet. I've started a million posts about feelings and all sorts. But nothing on the cancer front as it's been quiet, and for me that's all this blog is about. Not about Michelle Whyte as a person and my day to day activities and feelings. In short.. I go through long periods of feeling like life is normal and planning for the future (more kids, training in work etc) with the odd cancer related freak out in between. I even got pregnant at one point although unfortunately (or fortunately?) it never made it past seven weeks. Not long after.. I was lying in bed with robin, the light of my life, and we were so squished I was almost hugging myself when I felt a lump about the size of a tangerine (but not protruding as much). I was half way through a story.. And I said "and then... And then ehhh... And then they all went home and had hot chocolate and went to bed, the end." Robin was a bit confused at the crappy ending but I kissed him and came downstairs and half crying and hyperventilating told Davy what I'd discovered. He cried for a second then did his usual "me man, me take charge of situation." Thing and gave me two options.. See the doctor on Monday (it's Saturday) or go to out of hours emergency. I did the latter, my reasoning being; they will not be able to tell if it's cancer but they could possibly find out if it isn't... I was wrong but still feel like I made the right choice. They contacted my oncologist and gave me some pills to calm me down and help me sleep. So I talked to my onc on the Monday, she said much as I expected "it's a lump, I have no idea what it is from feeling it. Surgery can do funny things to your body, create scar tissue etc, we'll need a scan to figure this out". I think had it been near my scar or drain site I would feel a little more at ease, but it's near neither. Down at the bottom of my ribs on my back near where the positive margins on my diaphragm are. But who knows? So I had a scan two weeks later and I'm waiting on the results. As far as my uninformed mind sees it I have three outcomes... 1. It's looks like fluid, nothing to worry about (doesn't feel like fluid) or something along those miracle lines. 2. It's a solid mass, could be scar tissue or cancer, we will have to do a  biopsy (another two weeks?) 3. You have lung mets (explains my three week long cough) and the lump looks suspicious and will need a biopsy and YOU'RE SCREWED, DO YOUR BUCKET LIST NOW!

How do I feel? Numb. Manic. Guilty.

I broke down at first. I felt overwhelming guilt for not making the most of life after surviving a terminal diagnosis. Then I returned to my general state of numb depression where I get by without thinking too much about life and the negative possibilities. Don't get me wrong, my life is WONDERFUL! I have a beautiful and amazing family, I have the best job I think there is (I got that part time job and it more amazing than I imagined). But I have kind of been floating through it in a mix of worry/ sadness/ appreciative heaven. I feel like a near death experience should leave you with a carpe diem attitude... Not me though.. I just felt quite scared and lost my confidence. I appreciated much more of the little things in life and savoured every moment with my son. But still.. I could have been more active, been a better wife and mother, made a better effort.. But I spent a lot of time worrying and feeling sad about my fear of recurrence. What a waste. Kind of. It was also awesome. I had some amazing camping trips, holidays etc with my family and friends(which I think I appreciated the most because of my past). I also became a trainee ringer and had the priveledge of holding barn owls, tawny owls, ospreys, kites, buzzards, tits, redstarts, swallows, swifts etc.... How many people get to do that? I also brought robin along and he got to do the same because my bosses are wonderful souls! (Although he couldn't have been less interested but I'm sure he'll appreciate the pictures when he's older)

So here I am.. Wanting to spend all my time either watching my boy or making sure I leave some stuff behind (crocheting blankets, making photo albums) as he won't remember me if I die soon.

Let's see what tomorrow brings. The one plus to being a pessimist is you often end up please toy surprised or prepared for bad news.

Sorry to come back on such a bummer.

Monday, 13 May 2013

And the beat goes on...

I'm rubbish at updating my blog these days. I don't find time to do much at all really. Anyway, I had an x ray in march, which was fine, and I think I have one next month. I've been getting a pain in a new place in my chest but its not breathing related pain like my tumour was and its similar to a pain that I had at the bottom of my lung before, which was nothing... So I'm not TOO worried. But still quite eager to get my x ray. I'm still trying to talk Davy into becoming a sonographer so we can buy an ultra sound machine and just check as we please.. Anyway, not much news on the cancer front.. Which is GREAT news!

I've been working loads and loads and loads, and although I love the work, I want out!! I'm out the house for about eleven hours a day. After everything that's happened I don't want this. Family is the most important thing. if it means getting rid of our wee pony, not eating out as much or going on as many trips away but having much more quality time together, a home that's a sanctuary and a mother and wife who makes things easy and fills ye with love then I'd much rather leave and focus on those things. I'm just a bit of a stress head when I'm home and its not good. Amazingly a part time job has come up in my favourite district, with the team I'd LOVE to work for. So the application deadline is Wednesday, mine is already in. I'll see how that goes, if I get in.. Well that would just be perfect!! If not, I'm going to explain how I'm feeling to my boss and probably hand in my notice. I'd rather not, I don't want to leave, but I can't keep working this much. I want to be with my wee boy while he's growing, before he's off to school! I really hope I get the part time job. I know that when my time comes, whether I'm young or old, knowing I did my best being a mother and wife will make me happy and what I achieved at work won't matter.. Unless I worked too much, I know I'd regret the hell outta that! I seen a picture of my mum and it made me think how awesome it is to have a great mum, who you under appreciate until you need her then you remember how amazing she is. And when you move out and you realise she made everything so easy and kept things ticking over. I want to be a better wife too, Davy deserves it. I think I've been thinking about myself too much recently, what's important and what makes an impact is what I give to others. Love and compassion is what really matters and I want to have it on tap for my family. I don't want to come home from work and be a stress head in a bad mood anymore. So... That's that!

A guy whose blog I've been following since my diagnosis.. The only blog I've ever followed.. Passed on not so long ago. It put things into perspective, as his blog has done so many times. I keep having stupid fights with Davy about trivial things and its so pointless, time is so precious! I just wanted to mention him because he's been such a huge part of this whole journey I've had and helped me so much despite never even having met him! I think that had a lot to do with me thinking about all the above stuff again and I'm really glad it did. Anyway, he's a legend and I'm so glad I found his blog.

Until next time... Hopefully it will be equally as un eventful on the cancer front! I'm going on holiday next week :) :) first stop the folk festival on the island of orkney, then a trip down the west coast in the camper van, then off to the south of France. Can't wait! It flippin snowed again today!! What is going on?!? This time last year we went on a camper van trip and it was over 25 degrees every day.


Monday, 18 February 2013

Hmph!

I don't know why, but I'm having more than the odd cancer related freak out these days. It's only been a month and a half since my last scan, this is a new record I think. I've had two chest infections and the wheezyness just freaked me out I think, and got me thinking about things. I wish it hadn't...

I stupidly started reading about recurrence tonight, why oh why did I do that? Why can't I just get on with life and be glad to be alive? I read a horrible paper about how synovial sarcoma tends to metastasize after five years....?!?! Everything else said it usually came back within two?! Which would be great cause I'm more than half way there. Although I think in that study only four of the patients were treated correctly with a planned biopsy followed by a wide resection or amputation.. So that makes me feel a bit better as I had a decent resection, although without clear margins. Also this was between '68 and '99 and a lot has improved since then... So we'll ignore that one for now... But it gets worse!!! The next one I read about survival rates said Patients with synovial sarcoma less than 5 cm in size has a cancer-specific survival rate at 10 years of 100%, compared with a 10-year survival rate of 32% and 0% for those with sarcoma 5 to 10 cm and greater than 10 cm, respectively..... MINE WAS 17cm!!!!!! Uh oh.. And as if that wasn't bad enough it also said Patients with a clean margin of excision were found to have a 10-year cancer-specific survival rate of 43%, compared with 0% for those with microscopic positive margins... Which I had. Fucksticks!!

Why did I read this stuff?!? I've been putting it off for so long, why did I crumble tonight. I guess it's best to know so you can be realistic. But there's so many factors that make each case different, my oncologist said the fact it was growing in to my chest cavity without much pressure on it might work in my favour....?

Pffft. I'm annoyed at myself. I thought I could relax a bit after two years and forget all about it after five... I must have made that up though...? Who knows. I seemed to think that's what my onc said.

Sorry, this is a totally crap post. Especially since I say this blog is to give people in my situation hope... But the truth is having cancer is just shit some days, and you do stupid stuff like this. Then other days you count your blessings and get on with it. There are LOADS of survivors and treatments are always getting better so don't be disheartened. And don't read stuff on the Internet. And if your tumour was less than 5cm and you had clear margins - REJOICE! I'm going to ask my oncologist all about it next month at my clinic and get the proper up to date answers..which will hopefully be "patients with tumours in their pleural space called Michelle who suffer from anxiety have a 120% survival rate."

I love blogging, I feel better already! I AM so lucky, this time two years ago I was just hoping I could hear my son say mummy, and now he's telling me off and all sorts. I need to stop being so pessimistic.

x