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.
Thursday 12 May 2016
Living when you're dying.
I've always hated the idea of "battling cancer", or people saying they "kicked cancers ass". There's no battle.. if cancer wanted to take you out it could do so with ease. If you have an aggressive cancer and don't die of it you've been spared. I don't think I could ever kick cancers ass, but science can. I hope no one says "after a battle with cancer..." when i'm gone. No one wins, and no one loses. You just keep on keepin on, there's no fighting.
I feel like so much has been taken from me that I can't actually be me anymore. I can't do anything I want to do, go anywhere I want to go. I've been feeling so frustrated recently. The weather has been amazing and in any other circumstances we would have dropped everything and taken the camper van up the north west coast. Or i'd be at work, checking the owl boxes in the sunshine. I feel a bit bad for being so agitated about it, it is what it is and I have to accept that. I spent a day in my garden and we had some music on, had a BBQ whilst Robin played around and Davy planted up the veg patch a bit. It was a wonderful day but I just had to sit there in my wheelchair and couldn't move and it just made it all so bitter sweet. It was a lovely way to spend an afternoon, but just a reminder of everything i'm going to miss this summer. Cancer can take a lot from you but it can't take your love. So I think that's the main thing I should focus on, love. And focus on the things I CAN do. I can spend time with my family, even if it's just sitting around. And I have been. We've been to the beach, we've been for ice cream, we've been out for sushi (it was really romantic cause my tumour is pushing on my oesophagus so i often choke and then have to throw the food back up... well that happened) we've been home enjoying our garden, went to my mums for family dinner. Just... living.
It was really easy to LIVE with a terminal diagnosis when I could just function as normal.. or knew after treatment i'd be back to normal and could plan to live life to the fullest then. And thats what I did, I made the most of my time when I felt good. But living when you're actually in the process of dying, like your body is stopping working... is hard!
I listened to the first playing of the new radiohead album the other day. MUSIC! I've not been listening to enough music in hospice. And as soon as I do I kick myself because it's so good for the soul. So, when my cancer first came back, I had bought some tickets to see Arcade Fire's last gig of their Reflektor tour. We'd been to quite a few of their gigs in the UK and volunteered in Laaandaan for a night. Every single show was different and they hit it out the park every time. Being at an AF gig is my happy place. The night at the barrowlands!!! Anyway, So the last show was in Montreal, and we had tickets to the show and flights and everything (we were going to visit family over there) and then I had to cancel it all to start treatment again. So one of those amazing pals i mentioned earlier (Meg!) contacted her 'people' and managed to get me a get well soon card, thanking me for volunteering over the years and it came with a jumper and some badges and stuff! It totally put a smile on my face when I was at a bit of a low point.
I feel like so much has been taken from me that I can't actually be me anymore. I can't do anything I want to do, go anywhere I want to go. I've been feeling so frustrated recently. The weather has been amazing and in any other circumstances we would have dropped everything and taken the camper van up the north west coast. Or i'd be at work, checking the owl boxes in the sunshine. I feel a bit bad for being so agitated about it, it is what it is and I have to accept that. I spent a day in my garden and we had some music on, had a BBQ whilst Robin played around and Davy planted up the veg patch a bit. It was a wonderful day but I just had to sit there in my wheelchair and couldn't move and it just made it all so bitter sweet. It was a lovely way to spend an afternoon, but just a reminder of everything i'm going to miss this summer. Cancer can take a lot from you but it can't take your love. So I think that's the main thing I should focus on, love. And focus on the things I CAN do. I can spend time with my family, even if it's just sitting around. And I have been. We've been to the beach, we've been for ice cream, we've been out for sushi (it was really romantic cause my tumour is pushing on my oesophagus so i often choke and then have to throw the food back up... well that happened) we've been home enjoying our garden, went to my mums for family dinner. Just... living.
Collecting Robin from Forest School... my beautiful boys!
Sushi in the park (shortly after I puked in a cup)
It was really easy to LIVE with a terminal diagnosis when I could just function as normal.. or knew after treatment i'd be back to normal and could plan to live life to the fullest then. And thats what I did, I made the most of my time when I felt good. But living when you're actually in the process of dying, like your body is stopping working... is hard!
I listened to the first playing of the new radiohead album the other day. MUSIC! I've not been listening to enough music in hospice. And as soon as I do I kick myself because it's so good for the soul. So, when my cancer first came back, I had bought some tickets to see Arcade Fire's last gig of their Reflektor tour. We'd been to quite a few of their gigs in the UK and volunteered in Laaandaan for a night. Every single show was different and they hit it out the park every time. Being at an AF gig is my happy place. The night at the barrowlands!!! Anyway, So the last show was in Montreal, and we had tickets to the show and flights and everything (we were going to visit family over there) and then I had to cancel it all to start treatment again. So one of those amazing pals i mentioned earlier (Meg!) contacted her 'people' and managed to get me a get well soon card, thanking me for volunteering over the years and it came with a jumper and some badges and stuff! It totally put a smile on my face when I was at a bit of a low point.
That seems like a lifetime ago! Fast forward a year and a bit and i've been living with the cancer for ages and we've got quite used to each other... I'm functioning and living a normal life on pazopanib. So, much to my delight I see that arcade fire are coming to Europe and playing at a festival with Radiohead!! So i instantly bought two tickets and flights and got excited. Then.... my cancer went ape shit and spread. I think every time i buy tickets to an arcade fire gig in another country I GET CANCER somewhere... in my body. I've been to loads of gigs in the UK with no cancer dramas. So twice, some lucky bugger has got my tickets for free cause I've not been able to make it and given them away. Anyway... So i just turned 30, and Meg worked her magic again! She gave me a card that I was convinced Lisa had written saying it was from the Acrade Fire mob.. and they'd sent me one of my favourite tunes on vinyl (Sprawl II) a reflektor t shirt, a wee mini disc and a HUGE poster. What an absolute bunch of legends :) Especially Meg!
In other news.. I had a scan on Monday to see if I could have some radiotherapy to take the pressure off my heart. I was very excited about this.... had visions of me being able to walk around on my own again.. meaning I was well enough to start the chemo I was about to start, starting that and living for the summer, giving me enough time to have an awesome summer with my boys and either win the lottery to pay for a 3D printed rib cage and having surgery OR find a clinical trial that would completely cure me :) I went to get the results today. Not quite what i'd hoped (but quite what I'd expected) Everything has progressed very quickly, its spread, its getting ROWDY! (have I bought some arcade fire tickets recently?!)
So no radiotherapy as the tumour is pushing right on to my lung and when you've only got one wee lung thats not working at full capacity you don't want to blast it with radiation. The scan report was insane though, it mentioned my stomach had collapsed like that was nothing,,, what does that even mean?!? I've got "satellite tumours" on my tumours. Fluid in my stomach, cancer near my pelvis, in my lung, in between my ribs, and my two main tumours are doing very well for themselves. So.... aye. This is where I am, and where I am is here. I feel OK at the moment. Davy seems to think its a bit of a shock and I'll be sad tomorrow but to be fair I did KNOW it must be growing. And i feel better knowing rather than being in limbo. It's easier to accept. This is how we dealt with that news.....
Also, i had a sneaking suspicion as i'd felt my breathing getting harder the last few days, moving around taking it out of me more :o/
We shall see... xx
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You deserve nothing but the best, pal! :) If I could have got them to play in your living room I would have done. That gig in the Barrowlands was the best gig of my entire life, so glad I got to be there with you! WAKE UP! You make my life so much more special. And music rules. xxx True Love Waits xxx
ReplyDeleteAwe Michelle...big but gentle hugs..I hate this cancer...praying for you and your guys.m
ReplyDeleteThis is the first I am hearing of your story, and it saddens me that you find yourself in the same place as my wife was in March/April. Living or trying to live in hospice, waiting. Waiting for you know what. My wife's cancer did not take over, the chemo destroyed her heart. Took 4 months to stop pumping. Your story and your words/sentiments seem to echo what my wife probably felt as she lived in hospice. She never really talked about her feelings toward the end, just focused on her debilitating symptoms and tried to be comfortable. I will pray for you, Michelle as you face each day with courage. Your husband and child will survive, as I am. My wife only passed away 3 weeks ago, but I know we will get through. God bless you!
ReplyDeleteI love your writing, thanks for sharing! Been thinking about you often here in NY!
ReplyDeleteHi all I just wanted to update that I found this note about Michelle: http://m.eveningtimes.co.uk/news/14511703.Michelle_Whyte/?ref=arc
ReplyDeleteShe passed away Thursday May 19 and a memorial was held today at noon GMT.
What an amazing writer and spirit. I am so grateful to have met her through this blog. As I'm sure many do, I wish we could have kept her on this earth quite a bit longer. She was a wise soul and I am so grateful to her for everything she taught us over the five years of her blog and especially this last part of her illness. I am sure it was never easy, but from her I learned a lot about hope, perspective, and gratitude. She'll be very missed on this blog space, and she'll remain in my heart and thoughts always.
My deepest condolences to Davy, Robin, and all her family and friends.
With all my love
Steph
Rochester NY
So sorry to hear this news
ReplyDeleteDougie
Michelle's goodbye celebration was a devastatingly sad but truly wonderful day. She would have been very proud of Davy and the rest of her family and all who stood and shared their stories about their time with her. Her blog helped not only those going through the same as her but also us, her friends and family, who may not have known some of the more intimate details of her life with synovial sarcoma. For that, I am thankful to her for every word she shared. She is already missed massively, there is a great big Michelle shaped hole in our lives. x
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