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.
Monday 4 January 2016
Ok, enough break, can I have a scan please.
I'd love to say I enjoyed my christmas "break"... well I did I suppose. We got a house up north with our families and spent some time with our friends and it was all good. Most importantly Robin had probably the best christmas ever because his cousins were there to share the level with him. So for that i'm very pleased. I think my family enjoyed it too. For me.. robins birthday/christmas/new year (like I said in the last post) are a weird time for me. I find it hard to feel happy. Its when all this shit started and its also a time that really makes me think "is this the last birthday/christmas/new year we'll spend together?" So i'm glad it's over and its back to just normal days that we're not expected to be overjoyed about. However... as christmas and birthdays go, they were good ones for all involved I reckon. I'm just having a hard time due to the aforementioned crap and the fact i'm in limbo again... the worst place to be with cancer! I don't know how my radiotherapy worked, i don't know what (if any) options I have next, I don't know where and how big my cancer is... and i'm losing the plot! I've to get scans... well now I think but i've had no appointment through. And all of the above is making me CRAZY!!! I've been really down, in a dark place twice in my life.. i can't remember when the first time was i just remember thinking "fucking hell, i didn't realise you could get this low".. and the second time is now. Like crying in the car, shower (anywhere no one see's) and acting-like-a-fucking-psycho-and-trying-to-blame-others-cause-i'm-fine" kind of low. (only in front of my poor husband davy though). I am not dealing with. this. shit! I'm lost and numb. The worst part is... I'm AWARE of what an ass i'm being. I know this is a massive waste of time and energy and since life is so fleeting i should be making the most of the little time i have, being grateful, rejoicing, immersing myself in LIFE. But i'm not. I'm staying in all day, keeping my mind otherwise occupied with documentaries and useless crap. And i know what i'm doing is wrong and pointless.. but still, I'm not fixing it. Which just makes me feel like an ever bigger ass.
Five years of this bullshit makes it all wear thin. I'm sure i'll pick myself up soon.. I always do. And despite the above failings... I still count me blessings every day, feel like i'd rather live 29 years in this life than 89 in any other, relish every moment of my bedtime stories with Robin, look at the sky and feel absolutely blessed to be on earth... and all that jazz! I just feel a bit sad too at the moment.
Here's hoping my appointments come in soon and being good news. I'm hoping to drive to italy in my van through holland, germany, switzerland and france if i get good results. How amazing would that be for the soul? A few weeks together with no tv, no internet seeing europe in winter? If all goes well with the scans I'll leave in three weeks so we can celebrate our five year anniversary on the road :)
Inshallah - as they say in arabic.
P.S Robin can go his bike like a BOSS! coolest dude ever.
Five years of this bullshit makes it all wear thin. I'm sure i'll pick myself up soon.. I always do. And despite the above failings... I still count me blessings every day, feel like i'd rather live 29 years in this life than 89 in any other, relish every moment of my bedtime stories with Robin, look at the sky and feel absolutely blessed to be on earth... and all that jazz! I just feel a bit sad too at the moment.
Here's hoping my appointments come in soon and being good news. I'm hoping to drive to italy in my van through holland, germany, switzerland and france if i get good results. How amazing would that be for the soul? A few weeks together with no tv, no internet seeing europe in winter? If all goes well with the scans I'll leave in three weeks so we can celebrate our five year anniversary on the road :)
Inshallah - as they say in arabic.
P.S Robin can go his bike like a BOSS! coolest dude ever.
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I saw your blog on the SS Survivors Websire and read it all today. My 14 year old son has/had SS. I'm sorry for all you have gone through; and I'm glad you have a son and husband to keep you seeing the beauty of each day. Love and blessings.
ReplyDeleteThank you so much for reading and saying hello. I hope your son is doing well? You are exactly right about my husband and son helping me see the beauty in life. I'm sorry your son had to experience this so young! x
DeleteHi Michelle.
ReplyDeleteI read your latest posts with more than a little emotion, you write very well indeed and are able to articulate your very difficult situation with great clarity. It seems to me that it is impossible to be 100% looking at the good things around when you have a very bad thing going on. It also seems to me that you are very balanced in your feelings and emotions. Good and Bad , Ying and Yang and so on. But what do i know!!...well i do know this , getting on the road will be fantastic..what great trip to plan and look forward to, great times ahead.
We have a small camper van, VW size, and will be on the road as well, taking our new dog and just kicking back as it were, just the British isles for us with a trip to Scotland high on the Agenda, I want to visit Orkney in particular.
If i could be so bold as to say, keep writing and be a little kind to yourself, I think it is OK to be Angry and Sad as well as grateful for the good things.
Hope your appointments come through fast.
Best
Dougie
Lovely to hear from you Dougie :) What kind of van do you have? We're just fixing up our transported for the trip, put in a woodturner etc. Currently selling our old bongo which i'll miss! We too are taking our wee dog (I say wee, he's bigger than my son!) Just got him his doggy passport!
DeleteThe births isles will be wonderful, we did the hebrides and summer and it was magic. Ferries are also a lot cheaper now which is good. Orkney is an amazing place, something round every corner. And orkney wine and whiskey are both as special as the island :)
Thanks for getting in touch!
Michelle x
I have SS. I have a 2 year old and a 4 month old baby. You are an inspiration. Looking at Charles Miller alternative medicine and being treated at UM in Miami. I found out 2 months after giving birth to my baby.
ReplyDeleteI'm sorry to hear that, I hope you're treatment goes well and your baby keeps your mind occupied and full of love. x
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