Saturday, 6 March 2010

Things to Fix

How time flies. It's ages since I last updated the blog. Mum has now had her scan, but she only found out for definite that she was having a CT not and MRI scan the day before her appointment (handy). We had a call from Mum's oncologist to say that she was having difficulty getting hold of the radiologist to revert the appointment back to a CT and the next day Mum got a call about the appointment. "Phew, it's all sorted!" I thought when Mum called me to say that she was having a CT scan the following day. A little while later, she called again to say the someone from the MRI department had called to say they were expecting her the following day. So again, it all starts up again and I ring Radiology to check that Mum is indeed having a CT scan NOT an MRI. Yes, it's a CT. Reassurance abounds.

This appointment was so difficult to organise - but WHY? Miscommunication? Lack of detail? Circumstance? Timing? Part of me wanted to write a detailed letter to request that this would be looked into and things would be improved, but I'm wondering if my effort would fix problems like this for other people or just be put on the pending pile marked "Things to Fix".

Mum gets her results of the scan on Thursday this week, but she's not been feeling well for a few days. She says she feels drowsy and weak. I am full of a cold and cough, which is feeling like bronchitis, so I feel rubbish and haven't been to see her because I really don't want to pass on my germs. I actually haven't been out of the house since Wednesday. Mum called the out of hours GP this morning, who visited this afternoon and said he couldn't do anything for her, but that she might be anaemic and should phone her own GP on Monday.

I really do wonder why Mum has waited until a Saturday to call a doctor if she's not feeling well. She messed about yesterday leaving a message on the district nurses' answerphone, as she thought it might be low blood pressure, something that the district nurses are supposed to be monitoring (not that they seem to show up much...). She has been feeling poorly since Thursday, so why not phone her own GP to see what they think? It is very difficult to reason my way through all this, but then it's not me having to deal with it all first hand. It's not my cancer. Even Dad, who seemed so on board with his diagnosis and so engaged with his care, gave us a real challenge to face by not allowing his GP to refer his case on to the Macmillan Nurses. As my experience with Mum's Macmillan Nurse hasn't been great, maybe this was a blessing in disguise, but nevertheless it was something I just couldn't understand at the time. It makes me think two things; that Mum cannot really comprehend her diagnosis and hence does not really appreciate why she's feeling unwell, or that this latest bout of her feeling poorly is because I haven't been to see her for the last few days, so saying she's not feeling good will give her some attention. The latter reason would also explain why she's not phoned her own GP. It's almost like that option is too easy, would get results too quickly. Instead Mum is phoning me up saying she feels poorly, asking what she should do.

I think Mum probably is anaemic, but that the cancer is also spreading. She has a cough, which she down plays. "I only ever cough when you're here!" she says. But she coughs if I'm there or if I ring her up, so I think there is spread to the lung already, hence the eyelid problem due to sympathetic nerve involvement. A chest x-ray would have picked it up, but let's make things more complicated, shall we? Let's have a scan that takes weeks to sort out and may not give us the information we need! Simple? No way!

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