Scanning and Waiting, Waiting and Scanning…

I haven’t really felt like writing on here much the last few weeks.  Although I have been tinkering around with the site (all a learning curve), a logo (more later) and social media.  

Two main reasons for not writing.  

Firstly, we’ve been enjoying the summer holidays and trying to forget about the joys of dealing with cancer.  Pretty impossible. Secondly, my PET-CT scan revealed quite a few hot spots and since then I have been having various scans and procedures to understand what they might be.  

These have ranged from a sigmoidoscopy to pelvis and spine MRI’s and ultrasounds.  I also slotted that bone density scan in too – which was super efficient and straight forward and now my favourite scan above a CT. I’ve got another CT scan and a PET Scan to come later this month too.  

We are awaiting results for all of these scans (bar the always polite, but pretty searching questions I ask the lovely people at the hospital when they scan me).  Whilst these conversations can give hope (I opted for gas and air rather than sedation at the sigmoidoscopy, so was able to see a lovely clean (!) and clear bowel on the screen. I also asked lots of questions and made bad bowel jokes (I’ll spare you those) and laughed a lot (that stuff was great man!)), they (the conversations) can also be terrifying. I saw the ultrasound screen and the shape and size of the lymph nodes, it didn’t look great, nor did her face.

It’s a pretty weird situation we are in as my CT scan from the end of July (like the end of May) reads like a call for a party (and in fact we had one) ‘remains a complete response to treatment’; ‘Target lesions – resolved 0mm’; ‘non-target lesions: none’ – happy days whoo hoo!  Except I have always been able to feel the lump under my arm and having got smaller it has recently been getting bigger.  I tell everyone that examines or scans me this.  I also draw attention to the growing lump on my mastectomy scar.  I want both out with surgery. I dream about scalpel-ing them out myself (I kid you not).  This surgery has been discussed. In order to help us decide between surgery or radiotherapy on this opposite side (or something else) – we had the PET-CT in the middle or August.  

You know this if you are a regular reader. 

Here in lies the issue, as the PET-CT tells a different story to the CT – with less requirement for a party (unless you count one where people tend to wear black).  There are hot spots (‘possible carcinomas’ – yikes) in my bowel as well as hot areas in my pelvis, spine, lymph glands etc.  There  is the big lymph gland on my left plus 4-5 other small ones (this does not look good) and a rouge hot right side lymph gland on the site I had a full axillary node clearance (or at least 23 were removed).  This has worried me no end as I’ve already had surgery and rads here so that makes me think more chemo will be my only options. But I’m not an oncologist.

You can see why I haven’t written for a while and have been trying to enjoy the summer.

Anyway tomorrow is a big day as I finally get a whole pile of scan results and possibly a treatment plan.  I think a plan might be unlikely as they want to do another PET-CT scan to see if these hot spots have got worse or better 6 weeks later.  I am still on the clinical trial so i/v immunotherapy also awaits my busy veins on Wednesday.  Until the next CT Scan officially shows ‘disease progression’, we continue as we are.  This is so tough as my gut says the cancer is very much on the move again and growing elsewhere.

I think we need something more radical. And fast.  I hate waiting for action – it just isn’t who I am.

I hadn’t planned to write such a boring factual piece,  (well done for staying this far, hope the comedy pant shot helped), but I feel a need to do it to keep you up to speed and give some context.  

I have lots of half written material – poems and prose – which jumps back and forth and all around this journey, so don’t expect there to be a neat chronology.  If you can bear with the combo of current situation and flash backs to previous experiences you might get a bit of any idea of what a jumble my brain is in somedays.

In the meantime, I’m sorting new school shoes and PE kits, CAMHs referrals plus a suspected fractured collarbone in one child (end of last week) and two missing front teeth (today, don’t ask) with the other.  No time to feel sorry for myself, too much to do and deal with… 

People say ‘I don’t know how you deal with advanced cancer and two young children’, I say ‘thank goodness for the distraction and the very real reasons to live another day’.  We all need others and displacement activity (I’ve got a few posts of that soon too) to pull us out of, or stop us dropping back into our dark places.  How do you stay out of yours?