It’s only 8 days since I last updated the blog, but - wow - does it feel much longer - just so much ( rubbish) going on - so Rox wrote me:
Kale scale of bad news
Kind of what I was expecting
A bit worse than what we wanted
Let me think about that
Emergency exit?
The Past Week
Friday, I managed a short socially-distanced walk with Suzanne - this is where we truly faced the breathing problems I have - so we stopped for a bacon barm - leaning on a couple of lampposts:
Enjoyed having some company from my bubble, and continuing my #OpinionMinutes, and Sunday enjoyed watching Andrew watch himself on Songs of Praise:
So it’s nice to have a bit of good news. and Monday I was featured on Ticking Off Breast Cancer about surgery, and - even better - the bed company engineer visited and agreed that the bed was faulty (as Andrew had guessed, a bolt had fallen out, and then the ‘arm’ had twisted out of shape) - and it was fixed that day! So, this fits with another of Rox’s poems:
Kale scale of good news
Kind of what I was expecting
A new hashtag is born
Let’s accept this good thing
Everybody! Something good happened.
Also good news was seeing my podcast with Will Taylor come out, and participating on a panel with the Stronger Conference.
And I guess other good news, though it comes with all kinds of mental upset - is that it has been agreed that I will have a carer come for half-hour every morning to help me put my sleeve on
Oncologist Appointment
Wednesday it was time to head back to The Christie for multiple appointments
- First, a catch-up in the lymphedema clinic, where I was complimented on how far up my arm I had managed to put my sleeve, and a sense that there is already some sign of shrinkage. We also cut a bit off the fingertips, so I have a chance of touch-typing, using my phone!
- Second, a taking of bloods, in which we tried to find out where/how to get another yellow sharps box - finally agreed that District Nurse will bring on next visit.
- Third, a conversation with one of my SBCN (Secondary Breast Cancer Nurse), going through my ‘patient history’ document, and seeing which questions she could answer. She then went for a conversation with my oncologist…
- Fourth, a consultation with my oncologist
- We looked at the rash on my chest/nodules on my right shoulder, and agreed that they look ‘suspicious’, so I will be sent for a consultation/biopsy back with my original surgeon.
- Being between 2 hospitals there’s been trouble accessing my scan images, so I will be sent for another CT scan, also to particularly check out these new areas of concern, and (I guess), my lungs - what is causing the breathlessness (thought to be paclitaxel)
- If I stay on the capecitabine, then I will continue with everything at The Christie, if I have to swap to another IV chemo (depends on biopsy/scan results)* then I’ll go back to Stepping Hill. The scans hopefully will also give insights into breathlessness and pain.
- I will have denosumab at the next treatment, I’m allowed to have the COVID vaccine (next Tuesday),** we keep going with the Clexane (blood thinners) until at least next appointment.
* Can’t believe after only 2 cycles of capecitabine this is a possibility…
**As neither of my arms can be used, apparently will be in my butt - lovely.
Capecitabine
So the capecitabine (cape) - the only obvious side effects (aside from fatigue/sleepiness), is nausea - and we’re hoping to manage this better this time - with preventative lansoprazole in the morning, cyclizine 3 x day - and bedding the medication down with carbs (bagel, etc.) - so another poem from Rox:
Capecitabine with Kale (and Carbs)
Keep the carbs by my bed
And the love in my heart
Let the emotions wash over me
Exhausted, I persist.
The rest of this week, outside of conversations with palliative (we are now swapping from BuTrans to Fentanyl patches) and district nurses, has included long overdue chats with Leanne and Tansy, and Jane and I just enjoying a chilled afternoon whilst I try and take my mind off the constant shoulder pain - we did a very tiny walk!:
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