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My Own Private Chernobyl

Last week I had SIRT treatment (click on the link for information on it). I’ve spent the last week in a sort of radioactive glow. Due to my radioactivity I’ve had to refrain from physical contact with anyone. It’s been depressing to say the least. Thankfully as of Tuesday this week I will able to cuddle Violet to my heart’s content.

Yesterday was my absolute lowest since my diagnosis in terms of pain. I have a very high pain threshold – to the point where I didn’t realise I had a bowel obstruction as people had always told me – “you’ll know – it’s the most severe pain”. Well i didn’t know – it was just quite bad tummy pain. I think all the years of endometriosis has honed my pain threshold to a very high point.

But yesterday for the first time I begged Dave to take me to hospital as I couldn’t bear the pain I was in. I was sobbing and endone was not cutting it. Thankfully Dave rang the radiologist who did the procedure and he suggested upping the lyrica dose and the problem was largely solved. I still have pain and a limp but it is bearable. Apparently the collagen seal they used to seal up my femoral artery is pressing on the femoral nerve which is causing the pain. It will slowly lessen as it is absorbed into my body. I also have a bit of liver pain which is hardly surprising and hopefully means the tumours are dying!

i also started a new chemo protocol on Monday – FOLFIRI. So far I think it’s been less brutal than FOLFOX. The nausea is worse but the general feeling of death is less present.

I have such a long list of things i need to start advocating for. And SIRT is one of them. It’s not available publicly and can cost up to $15,000 which is out of reach for so many. Once I have my energy back, this is something I will focus on.

I’m sorry for how poorly written this post is – I’m a bit mentally scrambled and the neuropathic pain in my fingers makes typing hard. Hence the lack of capital letters in some places – I could TYPE IN ALL CAPS AND APPEAR TO BE SHOUTING AT YOU or i could go the ee cummings route, which is what i have done.

love to you all

caitlin x

4 thoughts on “My Own Private Chernobyl

  1. Oh darling. Thanks for writing this- caps, lower case, whatevs. Been thinking of you. Lyrica has the side effect of mental fuzziness, that will add to things. I hope you are feeling better soon x

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  2. I am so sorry that you are going through all of this Caitlin. I will be hoping and praying that you and your lovely family make it through this terrible time and come out the other side stronger and healthier than ever before. Molly

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