An unexpected phone call
Much to the annoyance of anyone trying to get hold of me by telephone, I've stopped answering these days. It's become a bit of a phobia - phone rings and I go into panic mode. Except I don't any more because I know I'm not going to answer it. Yet sometimes, it goes on ringing and ringing, like they know I'm in and are determined to speak. And then I can't answer because it's been ringing and ringing, and if I do they'll ask me why I took so long. Can't I just be out sometimes?
The phone rang today and for once I just answered it. A voice I didn't recognize said, 'Hi, this is Margaret. We met at chemo, I was having my last couple of sessions...' And I knew straight away who she was. I've only met her on those two occasions, but there was an instant connection and we really got on. She wanted to know how I was doing because I had had a bad reaction to one of the drugs when she last saw me. She had come to find me and sit with me while we got our treatments, but I'd suddenly started throwing up and then had breathing difficulties, and she had been moved to another chair. But she came back to see me when her session was over and I was waiting under observation before being allowed home. It was nice to chat, and I seemed to have forgotten that we swapped phone numbers to maybe keep in touch.
Margaret had very kindly got me the address of where to go to get a wig if I wanted one. The first time I met her, she had a nice hat on, but the second, she was wearing her wig. I've always felt a bit freaked out by wigs, but her one was nice and light in a silver white - very natural. It looked nice.
After some encouragement I'd decided to try the cooling cap, which has worked quite well so far. But unfortunately after my reaction to the first drug they were giving me, Pertuzamab, I had to go to a different hospital for the Herceptin and chemo, and there, the nurse, Jane, was much more slap dash about fitting the cap correctly. When I told her it wasn't covering part of my scalp she said, 'Well it doesn't have to fit all over.' (It does) and I said,
'But there's a piece as large as my hand not covered on one side.' So then (during the actual cooling) she snatched the cap off my head and, although still smiling, screeched high pitched, 'Well I tell you what, Deb-or-ah, why don't YOU show ME how to put it on!!!'
I stayed calm, but said, 'Look, I can see that you are finding me very irritating, but if this isn't going to work, I may as well not go through the agony...' And then she was all super reasonable, till she started having a go about the thousands of pounds worth of drugs I couldn't have the day before (because of the reaction) having to be thrown away and wasted. I knew it wasn't my fault, but I felt trapped and wanted to run away. I never wanted chemo anyway, I was content with a bunch of carrots at the start, but the NHS won't tell you how you are doing unless you accept their treatment - so you're stuffed. And according to nurse Jane, it's people like me who have brought the NHS to its knees. It was quite upsetting at the time.
So anyway, apart from a general thinning, the cooling cap has worked, except for a patch at the top of my head that didn't cool back down (after she swiped the cap off my head) by the time the chemo drug started going in, and the cap didn't touch that point, so now I've got a little baldy patch. It's not the end of the world, but it's a bit upsetting cos it didn't need to happen, and wouldn't have happened if I'd managed to stay at my fist clinic, where as I won't be having Pertuzamab again, thankfully, I'll be continuing with my treatments.
I'll see how it goes, but it's nice to have the wig shop number should I feel the need. I'm learning not to say 'never', as I once would have done.
Margaret is such a gentle soul, and so empathetic. She told me how she felt going through her treatment, and when I said I have been feeling like there's no end in sight and that I feel like I just won't be able to do it, she said that she felt the same around about the second and third treatments, but that those feelings passed. She said she has a great love of the sea, and that she and her husband often took trips out to spend days (when she didn't feel too bad) at the seaside. She said it's a breath of fresh air, literally, and otherwise, and being away from home she didn't bother with her wig; just enjoyed the feeling of the wind on her head, and went for a paddle. She said to plan lots to look forward to and it will pass the time.
I could just imagine her by the sea with her husband, eating chips, with the pleasure of the wind on her little bald head. That's where I've been going wrong. I seem to have put all plans on hold till this ghastly treatment is over, but life is for living now, not later.
As usual, I wasn't going to answer the phone, but I'm so glad I did. That one phone call has done so much to make me feel positive, and I'm not thinking so much about Thursday and the next dreaded chemo, as my next trip to the sea. And when all the treatment is over, Margaret, who is about to start Radiotherapy, and I plan to go out for lunch.