The Path Beyond the Haze

I’ve been a little quiet in the last few weeks. There’s been a lot going on in and outside my head. I’ve not known where to start and didn’t want to be trite.

It’s not appropriate to discuss it in detail here, but we have been having a long term battle with systems that support our children to understand themselves, be understood and reach their potential. This has been a focus long before my cancer diagnosis, but it just got a whole lot more urgent due to me feeling like time was running out to fight their corner. Let’s just say it was on my bucket list to get done.

One day I hope my kids will see that using my energy and our money for their diagnoses will have more longevity and impact than a trip to Disney. I am determined that they are aware of their emotional and practical needs, how to ask for help and support to create and take opportunities in life.

My mum was always there for me (and still is), she put me before herself or others on so many occasions. Sometimes this was intense and difficult for me and other people in our life, but above all I have had the privilege and knowledge that I am loved immensely and unconditionally. I want my children to know that too. Like my mum I want to help them in practical ways, but also to help them know themselves and be proud of who they are. I hope they have already felt that, and will remember it fondly with gratitude. I might not be there, so I want all the people around them to do their best to nurture and support them to be strong individuals.

Actually they already are strong individuals, but I want my diagnosis to make them both aware of their vulnerabilities and the power of resilience. I continue to believe that my attitude to cancer’s challenges will hopefully give them values and lessons that will endure long after I’m gone. I’ve also always believed that it takes a whole village to bring up a child and we need this now more than ever.

It’s one of the many reasons I am open about my journey. My broad and varied support team are as invaluable to us now as I hope they will be if and when I’m gone.

This post is taking a surprisingly sentimental direction.

I’m anxious about my CT results.

I’m waiting in clinic to see an oncologist. The path forward is a bit hazy at the moment. I don’t mind tough terrain, I just want to know the plan. I’m hoping with equal parts that the current chemo is not working and is working. If the latter, I stay on my current regime. The former continues the fight for immunotherapy or any treatment that slows the spread.

I’ve waited 3 weeks for these results and it’s been two months since my last scan results. A lot can change in that time.

Where am I now?

I’m now on the last day of Cycle 3 of Capecitabine. I’ve been on the oral tablets 14 days on and 7 off for 9 weeks. With multiple anti-sickness tabs and a strong routine around food, I’ve managed to keep them down. The other side effects are pretty grim. The skin on my hands and feet is red raw and swollen, peeling in places and inflamed.

My fine motor skills are being challenged as my finger prints are smoothed out and the fingertips are bolbus. This is further exasperated by lymphoedema on my right arm and a suspected DVT. My iPhone doesn’t recognise my fingers and even hitting the right keys and letters is a challenge. My feet are sore after walking or standing for too long and they are burning hot.

I’m not letting any of this stop me walking or typing, but it makes it more tiring. I’m annoyed with my failing body. In fact what I am annoyed with is the chemo is effecting me adversely, yet it doesn’t appear to be working.

I wrote in a previous poem that I’m happy to poison myself in the now to see more future. With each chemo that fails this journey seems more futile and the path ahead less clear.

10th December 2019

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?

Back in the Nook (Poem 12)

Path seemed clear for a moment; nothing is the same forever,
Now hot spots and uncertainty, cloud the route to sever.
More prodding, scanning, talking and results to endure,
Scans for clarity bring more amiguity and no hope of a cure.

Leaving the craziness. It’s calm, warm and still, back in the nook,
I’m enveloped in love. Held tight, so many emotions can let go,
Breathing in deep to my soul, exhaling from down low,
Wrapped in 15 years shared rollercoaster and the future cancer took,

Bodies morphed, trying not to sob,
Moving from daily doing to stopping and being.
Whilst accepting so much, it’s still a shock from which I’m reeling,
Unknown timeline, but a future I know cancer will rob,

Still and simple. Opened up, yet held tight,
Nestled in the nook. This is my safe place.
Lying here, in the truth; still a break from the inevitable race,
Are the scans revealing my future? Is there more blight?

17th August 2019