I seemed to have pressed the button - and so I need to create a new blog post.
I have spent a little time this week checking in on websites and updating others and found the Ranchlife website looking a little forlorn and forgotten, which means I haven't been updating on my journey.
I suppose that is a good thing, nothing to report, life back to normal, and to some degree this is true, but it's that new normal that I am still struggling to accept.
First things first, for those that are interested, a little health update. It seems to have been a long time, it is in fact nearly 10 months since the last one. I continued taking the PARP inhibitor and having regular bloods, and then at the beginning of the summer some of my levels, in particular my CA125 (A CA 125 test measures the amount of the protein CA 125 (cancer antigen 125) in the blood) started to rise, and continued to rise, so by July I was in a bit of a ditzy spin and the oncology team decided it was time for a scan. Firstly, to try and work out why the levels were rising and secondly to try and give me a little perspective and calm.
The scan was organised and an appointment made and I was seeing my Consultant within the month. The bottom line, there has been a change. 18 months ago my scan was clear of any disease, now I have a little showing, a tiny amount in my lungs and a swollen lymph node - but we are not panicking - in fact we are doing precisely nothing at all, apart from monitoring. Dr Mathews and his team have been brilliant. He knows, as a photographer, I'm not keen at looking at scan results,but was insistent that he shared these, just so I could visualise how SMALL the change was. Good Move !!
So what does this mean - well it means that I have stopped taking the PARP Inhibitor (as it's obviously not inhibiting) and we are monitoring bloods etc every 3 months. If I feel "off" or notice any changes or the bloods reveal anything, then we will scan again - and we will keep going until the team feel that there is a need to re-start treatment. This treatment would be another course of Chemotherapy - but that is not in any immediate plans.
You might think that this would throw me into another tailspin but not at all - 3 month cycles is good. It means I can book jobs for work, make plans and carry on with life without having to worry. Knowing that if there are any further changes, we are on top of it and will catch it early.
Stopping the PARP drugs has also started to make a difference. The "Drug Fug" is clearing, which is great, and I am starting to feel less tired - life is still not normal but is most definitely settling down.
I do however struggle with one of the side effects from all the treatment and that is the weight gain.
6 plus months of cancer treatment and operations and doing nothing but eat and sleep, plus the menopause plus a daily dose of steroids is doing nothing for my self esteem.
The steroids are to treat an ongoing condition called Dermatomyositis which is an auto immune disease that popped up just as I was being diagnosed with Cancer.
Google tells us : Dermatomyositis is a rare disease that causes muscle weakness and skin rash. Symptoms include a red or purple rash on sun exposed skin and eyelids, calcium deposits under the skin, muscle weakness, and trouble talking or swallowing. There is no cure, but treatment is done to reduce the symptoms.
I currently have no muscle involvement and it is all to do with the skin and joints in my hands. The joints have been swollen, the skin raw and the fingertips unbearably painful, which has caused great difficulty using the camera. It also leaves me with a red rash on my face. The steroids are currently keeping it under control whilst we try and find a concoction of drugs that will put the condition into remission. The side effects of the steroids are "moon face" ,coupled with the red rash, means I look like a beetroot !!
VANITY - you might think I'm being vain, and maybe I am, but being a different person physically to how I was before this journey began, eats away at my self confidence in all areas of life. I find myself avoiding mirrors, or struggling with that lurching feeling in my stomach if I catch my reflection in a window. I worry what will people think, will people that know me comment when I'm gone, "gracious she's put on weight" or " isn't she different", or that one comment " Oh you are looking really well", what you really mean is, I don't look the same or if I am brutally honest, you think I look fat. There I've said it. There will be outcry, calls of "remember what you've been through" or "you're lucky to still be here" - believe me, I know all that but what I didn't know, or even consider, is how important it is to be comfortable with who you are, including how you look. Fitting into your own skin - this isn't going to be an easy journey.
At the moment it's all encompassing, it's all day long, from getting up and standing on the scales, to eating thin air for breakfast, lunch and dinner, to needing new clothes to stop bulging out at the seams of ones that I've had for years, to Andrew giving me a hug and there being "new bits" (that popped up overnight) to just feeling different and not myself.
I'm still me on the inside, despite the lack of self confidence, I know that, but I'm someone else on the outside. My Facebook "memories" is keen to remind me of what I looked like 2 or 3 years ago. It's easy to think, go on a diet, increase your exercise, which believe me I am doing, but the moon face isn't going anywhere until I stop taking steroids, which isn't going to be anytime soon, and the menopausal weight just seems to sit fast, despite my best efforts. (The internet and my doctors tell me this isn't going to be an easy fight !!)
So, whilst not giving up and remaining determined to be as healthy as I can, I am having to learn that this is the new me. A dress size, that I had never really considered, doesn't define me, that my smile makes me shine, and not look like a beetroot with teeth, or something from The Rocky Horror Show and that I will find a new style that makes me feel comfortable with who I am. I may look like something from Game of Thrones, but hey, we live on the moors and Winter is Coming !!!
If you are wanting pictures - tough - I'm not that brave yet - having stood in front of a camera for the first time in a long time and seeing the results - I'm not sharing with anyone.
I will get there, and I will keep smiling, but just might take me a little while.