With October being ‘Breast Cancer Awareness month’ and so much pink and fluffy stuff – Younger Breast Cancer Network has been sharing stories from its members via Facebook all month – today is a piece from me – I was asked to talk about radiotherapy as part of it. So here’s my entry:
Tag: #WaitingRoomFeet
I have just returned from recording for the BBC Radio 4 Lent Talks, with my episode to be broadcast 27th March 2019 at 8.45pm (when I will link to iPlayer, and post up my script – although note we changed a few words as we recorded).
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Done my recording for BBC Radio 4 Lent Talk. #cancer #faith #uncertainty. On 27 March 8.45pm
My script features the YBCN, Gillian Straine, Jenny Baker, Susan Sontag, #YouMeBigC Podcast, Jo Taylor‘s #BusyLivingWithMets hashtag, Tanya Marlow, Sara Batts, Peter Harvey, Andrew Graystone and Kathryn Mannix, and starts:
I’m just posting a picture onto my Instagram feed, and as I have done several times over the past year or so, tagged it with #waitingroomfeet. As you might guess, this is a picture of my feet, in a waiting room – typically a hospital waiting room. In most of the waiting rooms that I’m in, I know that the majority of other people in this room have been affected by cancer, as I have, and I don’t want to breach their privacy in unwittingly capturing them on camera. I don’t know their individual stories or their prognoses, although I suspect they share many of my hopes and fears as we wait to see the surgeon, the oncologist, the radiologist, or any of the other myriad (of) specialists attempting to control the cancer that is seeking to take over our bodies.
The official introduction for the series is:
This year’s Lent Talks explore the theme of uncertainty through the stories of key figures in the Passion narrative. How do their trials relate to contemporary life? The six speakers reflect on these characters from a personal or professional perspective. Psychotherapist Mark Vernon argues that Doubting Thomas has much to teach us about the value of uncertainty in our lives, even though it is something we might instinctively try to avoid; psychologist Sandi Mann, explores the parallels between Peter’s denial of Jesus and the lies we tell each other every day; author Bex Lewis draws on Jesus’ Agony in the Garden of Gethsemane as she describes her experience of being diagnosed with cancer; retired High Court judge, Sir Paul Coleridge uses the example of Pontius Pilate to examine the moral conflict in the minds of those responsible for administering justice; theologian Candida Moss considers the questions surrounding Judas’ motives and what they say about the demonization of others and the complexity of betrayal; and finally, Alison Cope, whose son Joshua was stabbed to death, reflects on the grief of Mary standing at the foot of the cross.
So, today, arrived early, and was called in early – that’s unusual!!! I thought by the time I left the appointment with the oncologist today I would know what was happening, but there’s still a few questions but
- The FISH test has come back confirming that the original cancer was HER2-, and the metastasised cancer has mutated to HER2+.
- The full body scan I had the other day has come back showing just that one area of bone cancer.
- The scan did also show that there’s something that needs to be checked on my thyroid, so waiting for appointment for a scan for that, probably at Stepping Hill Hospital.
- I will have to have one of those full body scans about every 6 months, at the Christie.
- I remembered to hand in my dental form (dentist has to sign off that no obvious problems, as fillings, etc. need to be avoided for 3+ years), so plans for Denosumab can be made.
- A request to put my port back in is being made – this time it’s a plan for life, so awaiting an appointment for that, probably at the Christie (so glad I live close to both hospitals!)
- An appointment to check my heart has gone into the system – assume echocardiogram, at the Christie (probably have frequent ones of those too).
- There are still mixed feelings amongst the doctors about exact plan of treatment, but docetaxol chemotherapy, which is needed alongside pertuzumab and Herceptin will be happening. I was hoping I could refuse more chemo after one treatment, and continue with the other drugs, but apparently the balance between the toxic effects of the chemotherapy, and the effectiveness of the drugs, means that I will probably end up with a 60% load of the chemo drug for four cycles (at 3 weekly intervals). I’ve been told I shouldn’t drive back from chemo (again), so will be looking out for lifts/company again.
- At present, we are working on the basis that I will have had heart scan, and port implanted, and therefore a seat has been booked on the Laurel Suite chemotherapy suite (at Stepping Hill Hospital) for 11th March (afternoon, to have the pertuzumab), and the 12th March (morning, for docetaxol, and Herceptin), otherwise it may be delayed for a week. Either way, I have a ‘new patient’ talk on afternoon of 5th March. They know that I will likely put the cold cap on again, and woo-hoo, got another parking pass for next 6 months – just need to remember to actually go to the parking office and pick it up!
(1 April, 22/23 April, 13 May OR 18/19 Mar, 8 April, 29 April, 20 May – this second set of dates messes up many things including my tickets to Hamilton, so let’s hope it’s not then) - I’ll be back to see the oncologist again in 2 weeks (4th March), after he has spoke to Dr Colaco about the stereotactic radiotherapy (at the Christie), as advice from Dr Misra was to start the systemic treatment, and fit in the radiotherapy at an appropriate point, but Dr Chittalia wants to double check this fits with the NHS funding processes before we confirm chemo.
- I think I’ll be seeing a lot more of Dr Chittalia (oncologist), but still see Mr Dimopolos (surgeon) around every six months.
- All of the aches/pains in shoulders/knees, etc. that make stairs difficult, and hands very stiff (particularly first thing in the morning) are likely down to the Exemastane (aromatase inhibitor)
Asked about the size again, and again, ended up with so many other things to think about, left before answer was given! Thanks to Aspa for taking notes, and offering to accompany to more! 🙂