Monday, December 14: When I met with the oncologist last Monday, I’d already received from the Edinburgh Cancer Centre my appoint for the planning scan (08 December) and the verification scan (16 December) and a complete schedule for radiotherapy treatments, starting on 21 December.
The oncologist said she was thinking about making some changes to the schedule, perhaps delaying the start date. A week later I still haven’t heard what’s happening. As the accommodation previously provided for patients who have to travel a long distance has been closed – and I really do not want stay on a ward – the DH had booked a hotel room for me from the 21 December. He mentioned this to the oncologist as we need to know when to cancel it.
“Why aren’t you booking it through me?” she asked. “We take some rooms at that hotel and it wouldn’t cost you anything.” Behind out masks we gaped at her – this was the first we’d heard of accommodation being provided for me. We said we were very grateful. She said she couldn’t guarantee there would be a room available. Now, I don’t know when I start radiotherapy (I’ve been holding off writing this in case there was a letter in the post or a phone call today) or if I will have accommodation (other than in a ward). If I do start as originally scheduled I get to see my son as he will come through from Glasgow one day – if it’s later then I won’t see him at all over Christmas. Once again, we play the waiting game.
I know she is trying to extend the time I have to live but at the risk of sounding bloody ungrateful I am mightily ticked off about always being left in limbo waiting for other people to make decisions which affect my life, waiting for answers to my questions, having no direct access to my oncologist, not being able to make any plans.
And it isn’t just me. Sue is in the same position. It’s as if because we have cancer we won’t be doing anything that’s of any importance. The literature we are given talks about the stress of having cancer and the worry of how the treatment will affect us and if it will work. That’s fine. That’s expected. I can’t find anything, though (surely someone has done some research into this?), which talks about the stress and anxiety stemming from being left in the dark, questions unanswered – not to mention the feeling that my oncologist is far too busy to be contacted. Yes, I know that’s what the Cancer Specialist Nurse is for (apart from protecting her boss from patients) but she won’t have the answer to my question so I’ll still be left waiting until she contacts the oncologist to find out and gets back to me.
The day after meeting the oncologist the DH drove us to Edinburgh to the Cancer Centre at the Western General for the planning scan, preceded by the mask fitting. A very nice person talked me through the process and showed me a sample of a mask, and what it looks like before being moulded to fit the patient.
It went in a water bath to be softened, then was fitted over my face, neck and shoulders and screwed onto the table on which I was lying. I’d to wait until it dried terrified I’d need to cough before having it removed. Afterwards, I asked what to do if I did have to cough. “Just cough,” she said. I’m still wondering how. Swallowing felt difficult enough. I dressed, moved next door to the room with the scanner and undressed again. They gave me a ‘modesty cloth’ – a piece of paper about the size of two squares of kitchen roll. Fortunately, despite putting on so much weight since my cancer diagnosis I’m not a big girl and don’t have much to cover up. The mask was re-fitted, now feeling much tighter as it had cooled further, and it and I were screwed down again.
As always when undergoing scans, I close my eyes and wait until it’s over. This is a newer version of the CT scanner in Dumfries and while there was the sound of an aircraft preparing to take off – and land at the end – there were other sounds I’d not heard before – bells ringing, for one – and a feeling of a bright light washing over me. I’ll ask next time.
For some more pictures of how the mask is made, take a look here. The really good thing about having to wear the mask is that I don’t have to keep my arms raised above my head, but can rest them at my side. And I can take it away with me as a souvenir when the treatment is finished.
While waiting for the DH to return for me, I went into the Maggie’s Centre across the road. Oh, my, what a find! I’ve known about the centres and the work they do in providing cancer support and information through support specialists, psychologists and benefits advisors. I live in Dumfries & Galloway, home to Maggie Keswick Jencks who founded the centres but I’d only read about them. I had no appointment but was met by friendly, welcoming staff who introduced themselves, provided coffee, chatted to us (the DH arrived mid-coffee), gave me all sorts of tips, a contact email address and – best of all – for the first time since my diagnosis I felt I was being seen as a person, not a patient. It was a glorious feeling.
When I’m in Edinburgh for my radiotherapy treatments, I’ll certainly be visiting again. And lobbying for one to open in Dumfries!