And another thing!

So many things keep occurring to me. You may have to sit and stay a while....


I went to see Mum on Monday after the GP had been to see her in the morning. Mum was very impressed with the GP that went (a trainee), as he gave her a thorough examination and said she needed some blood tests. The GP had said that the weakness Mum had been feeling might be due to her being anaemic, so the district nurses would come and take some blood.

Whilst I was there Mum was telling me about how poorly she felt and how weak she was feeling, so much so that she said she was struggling to make a cup of tea. I asked if she'd been letting the carers make her lunch. "Oh no", she said. I told her that this was a bit strange, on the one hand her feeling so unwell, but on the other being able to get her meals ready and said that she should be resting and allowing the carers to make her lunch. It didn't go down very well. What's weird is that she really does seem OK. She has good colour, which seems to be indicating she's not anaemic. She's was quite upbeat during my visit and certainly not poorly in affect. It just doesn't add up. Either there is something going on, but something unusual makes her feel strangely ill but appear OK on the outside, or Mum is just wanting the attention.

Another thing that made me wonder what was really going on was when I phoned yesterday. She said she was feeling about the same as before, but when I asked if the district nurses had been to take the blood she said they hadn't and she hadn't been in touch with them. So feeling ill, needing a blood test, but not finding out what was happening with it? Again this doesn't add up. She left a message for said district nurses on their answerphone and heard from them this morning. Apparently they are "short staffed" and the GP hadn't marked Mum's blood as a priority, so they would probably be getting to Mum NEXT WEEK! Regardless of Mum's strange ill health, a blood test does make sense, so next week seems too long. I told Mum to telephone her own surgery and speak to her own doctor, which she did. Mum phoned me back (again), somewhat outraged at the receptionist saying she was going to e-mail the GP the message. E-mail?! Communication of the devil! The third call from Mum this morning came when she said her GP had phoned to say that he was going to ask the district nurses to visit urgently to take the bloods. So there it is. Bloods will be done at some point soon.

Two more things that are causing me angst - actually make that three! Firstly, I seem to be doing an awful lot of instructing. Phone the GP Mum. Phone the district nurses Mum. Check what's happening Mum. Nothing seems to be happening without me giving Mum a nudge, which again is very confusing as previously she would be at the GP at the drop of a hat for every single minor ailment, even during the time when Dad was ill and it was an effort to get her to the surgery. Perhaps it's just too much to be able to think things through rationally now Mum finds she has a serious illness, but I'm finding this very wearing. I just wish she would make her own enquiries and give me a call at the end of the day to update me, rather than me getting a call every step of the way and me having to make suggestions about what she should be doing next.

Secondly, all the messing about waiting for the district nurses to take the blood, when Dad's car is now on the drive at their house and my brother, who's car it now is by the way, is currently staying in that house. I know the car is on the drive, because I put it there on Monday. I also put the new car tax disk in the car, which was sitting on Mum's dinning table rather than on the windscreen. I don't think I can really do much more to enable this driving process. So the car is on the drive, the potential driver is in the house and there district nurses are booked to do a home visit? Grrrrrrr! Arrrggghhhhhh! This is just getting so stupid. It's nine months today since Dad died and brother still hasn't driven that car. What's going on?!!

Finally, I don't feel very well, so I suppose all the confusion of the last few days is making me feel ultra sorry for myself. I just feel yucky after the cold and coughing last week, which is lingering to this week. I fancy Yorkshire puddings for lunch, but we are out of eggs (or frozen Yorkshires) and the shop seems a very long way away. Not to worry. Tomorrow is another day, one with a lovely oncology appointment to look forward to.

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!

Things move on. Things stay the same.

We've just had a bit of a complicated week. It started last Sunday, with Mum phoning to say her eyesight was blurred. Her eye had been uncomfortable for some time and she'd seen her GP who had given her some eye drops. We went through a list of things with her (did she have headache, did she feel sick, etc) and she concluded that it was more of the same problem with her eye. She would give her GP a ring in the morning.

That night the phone rang at 10 to 11. Many will know that odd feeling that comes with a late night phone call, that "it can't be good" sensation when it starts to ring. Mum said she had a pain in her side and was going to phone the out of hours GP. I asked her if she wanted me to go over, but she said she'd ring again when she knew what was happening. I was really tired, so got ready for bed whilst I waited for another call. She phoned again at 20 past 11, saying that a GP would be going to see her, but it would be up to a 2 hour wait. I said that I was going to have to go to bed, but that she should call back if they wanted to take her to hospital. I would call her first thing to see how she was. Phoning her on Monday morning, the GP that visited during the night said she had pulled a muscle. Mum was calling her own GP about both this and her eye. I told her I would call round to see her that evening, to which see said my brother was going so she said "you don't have to come if you don't feel like it". If you don't feel like it... What a curious phrase... I did go round that evening and was very shocked to find that Mum's eyelid had dropped half way down her eye, something that she had failed to mention and something that my brother had apparently failed to notice. And yet it was enough to freak me out! She had apparently pointed it out to both GPs she'd seen in the last 24 hours, but they just said something about a link to the tumour and told her to mention it when she went to see the oncologist that week. This didn't seem very satisfactory, as they might have explained why this would link to a dropped eyelid.

Two days later, my brother's visit ends. I ask Mum if he brought the details of the breakdown cover? No, she says, he has forgotten AGAIN. I start to have a bit of a rant, at which Mum starts to excuse brother. As a consequence my rant escalates to saying that this is now his car and he needs to sort it, so I can sort the MOT and he can start to make use of it to support Mum. Is this rocket science? I'm beginning to think so.

On Thursday I took Mum to her appointment with the oncologist. As expected they explained that the eyelid problem would be indicating that there was some nerve involvement somewhere, maybe indicating a tumour elsewhere. Mum has been referred for a CT scan, so again we are waiting for tests, for news, for an outcome. I offered to take Mum to the shops on the way home, so we called in at Marks and Spencer, where she went on a shopping beano for delicious pre-packed food. She so enjoyed the chance to do this. Again it is a simple thing, but I am a feeling the pressure to fit everything in. If only there was another car for someone else to drive, so Mum could be enabled to go out! Oh wait a minute, apparently there is...