Why do posts have to have names? It's annoying.

I was diagnosed 4 years, three months and 1 week ago. They always talk about five year survival.

Will I survive five years? I have no idea. At the moment it could be months or years depending on whether or not any treatment works. I am so scared it might be months, but find it so hard to even comprehend cause I feel totally fine. Any time I get sick though I think "Is this it?" I worry i'm getting sick because my cancer has spread and i'm not going to get better. That's what's going to happen one day, out of the blue... and I can't, no matter how hard I try, prepare myself for that. I think at the end a calm acceptance will take over (after the blind panic).. but I just wish i could come to terms with it now and stop worrying about it.

Instead of focusing on that though i just want to focus on LIVING. Is that wrong? To ignore it an get on with life while i'm living? I'm not sure. Health is not the absence of disease but the presence of vitality and overwhelming wellbeing!!

Loving planning my trip to the hebrides just now to do our sponsored cycle.. we have raised £2,500 so far which is unbelievable. I'm mostly looking forward to the time away with my beautiful family and the beauty of the western isles. Hoping to spot some special birds. I also can't wait to get ringing this year.. breeding season is upon us and I can't wait to hold those beautiful wild creatures again. The ospreys, owls and eagles have returned to their nests and it's shaping up to be a good summer :)

xx

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..

:)

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.

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

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

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.