Looking back on it, Cycle 1 was hell on earth. It pretty much floored me for the whole 3 weeks (and beyond!). My bloods wouldn't quite play ball afterwards and so cycle 2 was paused. Then something tragic happened. My Meso friend Natalie passed away.
Natalie was the first person I spoke to in depth about living with Meso, and being the same age a lot of things resonated with me. She was living her life in Spain with her husband and was navigating this life with so much courage and determination, it gave me strength and determination to do the same. She was kind and caring and was lovely to talk to, we shared a sense of humour and I know she knows how much I appreciated her. I got to meet her in person at the national patient & carer day in October last year. She made a real impact on me and I will miss her greatly. It really hits home when this happens how tragic this disease really is and how we must try and change things so that this doesn't keep happening to people. Innocent people.
So I ploughed my time into campaigning again, I started a government petition, we have 6 months to generate signatures. It takes 2 minutes, so please sign it here https://petition.parliament.uk/petitions/635817 . Thank you to all those that have already done so. I've also been busy; taking part in reasearch interviews, speaking at conferences with the national asbestos auditors, and watching the airing of the BBC show 'Con or Cure' with Dr Xand. The show highlighted all we hoped and it gave Mesothelioma the spotlight. Alfie (the dog) has never been so famous! I mean he'll not be auditioning for Lassie, but he's enjoying the limelight nonetheless.
The kids have been off school so Maddy, Lily and me have been to an escape room, been for afternoon tea, Maddy even had her first ride on a motorbike (we'll make a biker chick of her yet!), Liv hasn't taken part, she's too cool for that now, she's been working (and playing) hard and I'm so proud of her. Me and Mark got an invite to the Lord Mayor of Gateshead(s) annual ball. We met some lovely people and had a great time. I'm vibing a masquerade ball, you only need to do half a face of makeup!
Natalies passing made me think about my own future. Natalie had a lot of chemotherapy and other treatments for her whole 5 years after diagnosis. I started wondering if that's what I want? Do I want to spend how ever much time I have left having treatment and feeling like I have the last 3-5 weeks? Maybe I needed to have some time off treatment? I decided I'd have my CT scan and make a decision, that would be easier right? Well, life was just about to throw me a curveball.
The Curveball: CT results; shrinkage of the pleural tumours, wow that's really good news. No change in the abdominal nodules, sorry what?! What abdominal nodules? So apparently my cancer has spread to my abdomen (sometime in the last 10 months). I was not aware of this, no one told us, and if anyone has seen me lately I look about 9 months pregnant, that's ascites (fluid collected in the abdominal space), likely from the abdominal metastases (spread). Pretty big curveball eh?! Not one that you can knock out of the park, no, one that hits you full force in the fluid filled gut!
So, the plan is to drain the fluid and see if it comes back. If it does I'll need a permanent drain putting in (yey accessories! Not the same as a prada clutch like?!). What the next plan is I don't know, watch this space..........
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