A Painful Weekend

2nd June - I have had the most awful stomach pains overnight. Horrendous severe cramping that causes me to writhe in pain. Every time I cramp at my stomach area it radiates around my back. My back is super sore, especially around the drain 2 area so the combination of both pain sites together is agony. A nurse gives me a strong painkiller at some point and the pain subsides a little. 

I have now had diahorrea 11 times, surely this is not a side effect of new AI I took last night. Diarrhoea is listed as one but surely not this much this fast?!

Mum and Col visit later that day, despite my sore stomach I need to eat. Mum helps feed me a soft jacket potato, I am totally incapable of doing it myself.

Later Rob and his Dad visit, just for a little while. I am aware people want to see me without overwhelming me, it’s a good idea, at the moment the smallest levels of activity exhaust me.

Caroline visits that evening, she brings me a few goodies and she also has super exciting news to share with me....

💕 Modo, Caroline - Huge congratulations 💕

3rd June - Another night full of spasms, writhing and pain 😔 Rob visits early and speaks to the nurses and doctors to see what we expect next plans to be and just why I am in so much pain. It turns out that my blood markers (taken from my new in place PICC) are showing severe infection still. There is some mention of a normal infection marker being around 30, mine is currently sitting at over 2,000. That’d be why then. The plan is to put me on a 10 day course of antibiotics with a drug called Meropenem and because of a potential thrush infection in my chest I am also started on a course of antifungal drugs. These will all be via IV through the PICC line. Although I have the raised infection markers, my kidney markers are actually showing improvement so that’s one small win.

Michelle and Lou visit about 11am. Today is Michelle’s Baby Shower that I had organised with one of her sisters Lisa. I’m really sad to miss it 😔 There is a scrummy Afternoon Tea planned at Joanna’s Boutique Tea Room with games, balloons and decorations.

Joanna's Boutique Tea Room

Lisa, who is an amazing cake make and has her own cake making business called CaketoGo has made little cupcake favours for everyone too. She has saved one for me!

One of Lisa's Cupcakes

I had weirdly been obsessing about my chipped toe nail polish, it was becoming a massive issue in my still very befuddled brain. Luckily Mum realised and when they visited tonight she brought in nail polish remover and removed the offending polish for me, I was so pleased. Sounds so odd writing that! #MumToTheRescue.

I am in dreadful pain down my leg, my knee is excruciating. Tonight Mum and Col tag teamed, Col massaged my leg whilst Mum spooned dinner into my mouth. The pain makes doing pretty much anything pretty much impossible, including eating. I'm actually really struggling with eating anything at all at the moment but I know I have to. I just don't fancy anything at all.

Oncology Meeting

Rob and I head to Crawley where I have a meeting with my oncologist. Obviously there are no results from the MRI yesterday. However there are some results and in truth they aren’t great. A year to the day since my secondary diagnosis it would appear the pesky cancer is on the move. 

The CT that Michelle took me to that I was so nonchalant about has shown that my letrozole is no longer working and the cancer has broken through. So I got about 10 months on it after everything I went through with the trial.... 

I don’t really know how to feel. The bastard cancer has now additionally affected some paraaortic and retrocrural lymph nodes and also some of my skin. 

I already knew about the skin though, I could feel it getting more noduley and hard around my lower left boob.

It has also caused the pleural effusion.

I'm frustrated that I only had the MRI part of these scans yesterday because it means we don’t know for certain about bone progression. 

We discuss a new treatment plan, basically switching Letrozole to another AI. The new plan would be Exemestane and a protein blocker called Everolimus.

I feel strangely okay about this. It’s not in my organs, it could be a lot worse. Yes the new drugs will come with their side effects but I’m ready to keep fighting.

Dr P takes me through to the room where they give you a feel after “the chat” and I show her the area of skin I was concerned about (which has been picked up on the CT scan anyway). I also tell her about my wish for palliative rads on my back and thank feck she agrees.

In that side room she listens to my chest, she is concerned some pleura fluid is re-accumulating on the left side again and wants me to have another drain. She says there is actually a possibility for me to have it tomorrow and wants me to go for it. Once I have it, I can start the new E & E treatment next week.

"Sure" I say. Despite everything I’m feeling good, let’s go, get it done, then I can have a day to recuperate and then go to LWTF. I love LWTF, I missed it last year due to the secondary diagnosis shock. This year I want to go, to be there, to see people, to interact, to do my job.

I tell Dr P of my intentions to go. She tells me she doesn’t think it’s a good idea. She advises that I perhaps go for just a day later in the week and says she thinks that may even be too much 😥

She asks that I go and have bloods taken so they are ready for tomorrow's drain op. I hate bloods so much. However I strike gold and get the lady who always gets them first time. Small mercies.

Then finally I go up to Comet ward to have my Denosumab injection and for the first time the injection bastard hurts. Rob and I eventually head home and I crash out on the sofa exhausted.