Outcomes (not in any order):
1. Zolendrate. Regardless of the Leeds Hospital Trust’s leaflet saying sickness is one possible side effect, Dr D held fast to her belief that it isn’t and she hasn’t known anyone ever be sick. Ok, but may I have some kind of prep, given my phobia and what the leaflet says? I can take a cyclizine. That works for 6 hours so should be ample. Conclusion: Dr D doesn’t understand phobias, let alone phobics. So I’ll be self medicating and hoping I’ve assessed it right. I must make sure I have a sympathetic companion!
2. My throat. No need for a camera exploration which was what was being discussed by Radiotherapy. She can see enough and there’s no visible damage. However, radiotherapy will not have caused my gruff voice because it doesn’t touch the voice box (can’t for the life of me remember its proper name). So why do all the leaflets in the hospital say that radiotherapy to the collarbone can cause a sore throat? I don’t have a sore throat but I do have a gruff voice, which one would normally associate with a sore throat. Well, that’s really good news and isn’t it a good job I didn’t know what they had in mind as I would have been a wreck these last few days. Ignorance can be bliss.
3. Paclitaxel ONLY affects the peripheral nerves affecting the hands and feet. That’s it, full stop. It doesn’t affect the mouth, let alone the throat. It certainly doesn’t affect internal organs. Or areas of skin. Nor would it affect my ability to walk normally or my swallowing difficulties. This may be something separate from the effects of chemotherapy and needs to be investigated. Next step, an MRI. In a desperate attempt to avoid such horror, I asked if it could be caused by stress and anxiety, given the timing of onset - just before surgery, when my mind had wisely become reconciled to the inevitable and I’d stopped catastrophising. Some might, like the initial problem swallowing, but not all of these together. I couldn’t get out of it. But again, the leaflet provided by the Trust that employs her says clearly it can affect the mouth! Who writes these leaflets? It’s a bit like a teacher who tells pupils to research from X. Y and Z without ever reading the sources herself - bad practice?
4. Please keep a daily diary to monitor severity of the problems. Ugh, I dropped the diary months ago. It says Roll on Summer. How naive of me.
So I left with a friendly thank you and a smile, inwardly screaming no no no no no... I can’t do it. By the time we got downstairs, I wanted to cry. Of course I never do. I booked a cab, was told 10 minutes (unusual but then the cricket World Series/cup - what do I know or care which? - is on so maybe some drivers are getting delayed. So much for reassuring Dennis! I went to sit on a wall, away from the smokers. There was just enough space next to a young woman who, very timely, picked up her things and stood up. I made a flippant comment and she sat down again. I sensed she needed to talk. Wasn’t it lovely in the sun, so long as you could pretend the wind wasn’t here? Was I visiting someone? (See? I told you it was a good wig - certainly fooled Dr D because she said “I wasn’t expecting that” when I whipped off my wig so she could test how much I could feel). I told her I was a very pissed off patient, having gone for a simple check up and ending up being told I’d need an MRI. I asked if she was a patient too. Yes, she had a weight problem, not anorexia but caused by the troubles life throws at you. So we talked about how hard it is to put on weight, how strange it is that we both have the same problem. She claimed these things were never sheer coincidence but meant to happen, so I said ‘Serendipity?’ To show I understood (but didn’t concur - it was sheer coincidence). We had such a good chat, Dennis assumed we knew each other and so kept away!
But, to the girl on the wall - THANK YOU - you broke the spell. I stopped feeling down and started feeling angry lol. Anyway, I hope she finds her solution because I know how hard it is to be very very thin and underweight and have people making unfounded judgments about you. I can imagine the hospital staff thinking “ok, we’ll play along with you but you’ve got anorexia, no matter how much you deny it.” There’s anorexia nervosa and there’s anorexia. Very different.
Back to me. Back home, I broke my rule and I googled peripheral neuropathy. Even the NHS site says it can affect your mouth! Actually, it said it can affect your intestines too. Dr D, you need to read more and learn from your patients. Then I looked up MRI on the NHS site. I reckon I can do it. It’s open both ends. And why not get everything checked out as a bonus? So right now, I’m feeling more positive thanks to the very thing I’ve protected myself from throughout this crappy period - good old Google. Just goes to show what a bout of temper can achieve ;)
But I still think DR D is wrong.
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