Arses and Elbows

hmmm.. You can tell when a hospital has institutionally got used to you - you don't actually get to see your own doctor.I should have worked it out. An appointment with Dr Coxon at 2.00pm on a Monday? Same time as the Case Meeting they have each week...But Dr Lee, the Senior Registrar was initially very helpful and gave me plenty of time for my questions.There's no way they'd let me have the chemo orally - it's simply not licensed in the UK for use with rectal cancer and if Dr Coxon went ahead and anything went wrong, she wouldn't have a legal foot to stand on.

Ah well, I thought - I gave it my best shot. The monthly treatment it is.I asked about alternative therapies - they're not very happy about acupuncture - it's the ( small) danger of infection from the needles when my immune system is already down. Head and foot massages are OK ( including reflexology) but not full body massages – as if I’d want that in my bagridden state!

So far so good. The appointment ended with me signing the consent form and giving more blood – the next thing that was to happen was that the Chemo Unit would contact me in a day or two to sort out when to begin my treatment.

I came home and was halfway through a call with J to update her when I got a call from Alison the Colorectal Nurse. ( There’s a pecking order here.)

She said that Dr Lee had passed on her concerns about my continuing night sweats ( what concerns? I said they were still happening but were getting less frequent but she didn’t say anything to me about concerns) to Dr Coxon ( ah – she did show up then…) and could I tell her ( Alison) more about them. I repeated what I had told Dr Lee. Alison said she’d talk to Dr Lee.

Then Dr Lee rang me. Due to the continuing sweats and presence of the abscess they had decided that they couldn’t give me chemotherapy after all! Too much risk if I developed an infection once they’d knocked out my immune system with the chemo.

Amazing how suddenly she came up with a whole set of arguments about how chemo probably wasn’t that effective with rectal cancer anyway – they don’t have the  research evidence etc…

I went up a height. I had specifically told her that the sweats were getting much less  and I had thought this continuing decrease was the basis upon which Dr Coxon had agreed to give me chemo last week. Dr Lee wasn’t sure. ( I could hear the distinct sound of responsibility being avoided here… ) I also said how disappointed I was that they told me now  - I was ready for that decision last week and had not been given any impression that the decision to give me chemo was dependent in some way.

I asked about deferring a final decision for another fortnight – after all, I’ve got three weeks till the deadline…

Dr Lee said she thought I should speak to Dr Coxon. ( The Dr Coxon I thought I’d be speaking to anyway at 2.00pm this afternoon…)

Dr Coxon rang. Rehearsal of all of the above. She said that her decision to go ahead with chemo last week was based on the assumption that by the time she ( sic) saw me today the night sweats would have cleared. Not what I understood.

Anyway. Something has been redeemed from the situation.

We’ve agreed that they will go ahead and set up the chemo appointments ( I understand there’s some preparation they need to do with me) for Week 12. Dr Coxon will see me in Week 11 ( a fortnight today ) to decide whether the abscess/sweats have sufficiently abated ( this means stopped I think) for her to go ahead with the chemo the next week. (The Night Sweats Diary begins tonight..) Final decision then. Well – at least that’s clear. She’s also going to put me on weekly chemo if it goes ahead as that is more controllable if I do pick up an infection.

Honestly! When you think about all the faff I went through about this decision and the different regimes I might have!

In the end everything is still up in the air – and given what Dr Lee said in her anti-chemo speech, it begins to make me wonder about the whole thing again. Tonight I almost don’t care either way.

As I muttered to myself later – it’s like they don’t know my arse from their elbow..

But I’ll be really pissed off if I end up not having chemo and they deny me the reconnection indefinitely due to the abscess. When I spoke to J later about it, she pointed out that if the abscess was such a concern, then why weren’t they giving me antibiotics to deal with it? Another call to Alison about that one tomorrow I think.

I’ve just been for a two mile walk .I think I feel better for it – but I think I’ll open a bottle of wine anyway…