Heavy Mental

Time marches on so quickly and yet more weeks dash by since my last post.

Much has happened, but in a nutshell, Mum's scan diagnosis revealed a small brain tumour, which is what has been causing the eyelid drooping. She has since had a week of radiotherapy to shrink down the tumour, but has been left very tired as a result.

In black and white this actually seems very, very simple. In practice, not so much. The weekend before the radiotherapy Mum had a tummy bug and phoned me early on the Saturday in a panic, just as I was heading out the door for something I'd had planned for a while. She wanted me to call round. By the time I got there, I was so worked up by thoughts that this was all something that the carers could have done, had they not been canceled that is, that I basically walked in the door and lost the plot. What also annoyed me greatly was the fact that Mum had put on a poorly voice and had said she was in bed. I arrived to find her sitting in the lounge, reading. I did apologise later for being cross when she felt poorly, to which Mum said she thought I should go to the doctors. She obviously thinks I am mentally disturbed and cannot comprehend that this constant state of emergency and need to be on-call all the time weighs on my brain like an anvil. It's enough to send anyone over the edge, particularly as there are so many alternatives. Commonsense for example.

As Mum has felt so washed out since the radiotherapy, we are now in the quagmire of trying to reinstate the carers back to three times a day. Mum is angered by the fact that this requires yet more assessments by social workers and so on, and doesn't seem to realise that all this is created by the fact that she stopped the visits in the first place. It seems that she refuses to see that her cancer means she would start feeling ill pretty quickly, but perhaps many do this when faced by such a crisis. Whatever the reason, the negativity, the criticisms and the multiple phone calls are not providing me with the best of circumstances to function effectively on a day to day basis. And I suppose it's only going to get worse.

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!

MRI Regardless

So much for my efforts on Monday to flag up Mum not wanting an MRI appointment and her needing a CT like her oncologist originally requested. Today she got an MRI appointment anyway. Mum was quite happy about it at first, as the information leaflet the sent her described it as a polo mint, but as I pointed out it's not the open-type polo mint like the CT scan she had before. Then she started to get panicky. Then I start the phone calls to the radiology appointments clerk, who told me to phone the oncologist, to the oncologist's secretary, who wasn't there so I had to talk to one of her very unhelpful colleagues instead. Question: Why do medical secretaries put their calls through to someone else rather than having an answerphone, if that someone else isn't prepared to even take a message? And with this stalemate, until office hours tomorrow.

Another question: Is this all rocket science? I mean, I did TRY to stop this happening, I did leave messages with the right people and I did check (yesterday) that the oncologist had got the message, but still Mum got the appointment that's now upset her. Yes, the oncology secretary did actually say that she hadn't seen the oncologist, but did tell me she had got Mum's notes and my message, so what can possibly be going wrong? It's a waste of my time, an MRI appointment and Mum's sanity. Mum has phoned four times in the space of about half and hour in a flap about whether or not the scan was or wasn't "the polo mint", and saying she would refuse the MRI. All this is what I tried to avoid and it's still gone wrong. It's safe to say I am cross and now have to wait until tomorrow until I can speak to the oncology secretary (or one of the unhelpful secretarial colleagues). It's frustrating to say the least.

MRI? You're joking aren't you?!

More of these cosy bad boys later!



It's strange how things never seem to be straightforward. I don't really know why, but alarm bells had been going off about Mum's CT scan appointment. It's been well over a week since we saw the oncologist and I thought she said that Mum would be seen for a scan within a fortnight. Mum thought the oncologist meant that she would have a date for an appointment within two weeks, so wasn't particularly worried. For some reason it just didn't seem right not to have heard anything, so I checked with Mum today that an appointment hadn't come through in the post and when it hadn't rang the oncologist's secretary. Unfortunately the secretary doesn't send the radiology requests through, they are done from out-patients, so she advised me to ring the radiology appointment at Mum's hospital. I suppose this represents the difficulties of having cancer care at a specialist cancer centre and other appointments for scans, etc, at Mum's local hospital. Referrals are sent away from the specialist centre personnel, who don't necessarily know what's happening in the local hospital. Never a truer thought actually, as when I phoned the appropriate radiology appointments person, she tells me that the appointment seems to be for an MRI rather than a CT. "Oh dear", I say, or words to that effect and explain that Mum will NEVER have an MRI and that the oncologist had specifically requested at CT to get round Mum's claustrophobia problems. The radiology lady said she would look into it and ring me back.

Although I didn't have long to wait, I managed to grab had a corned beef sandwich with brown sauce and tried on my new sheepskin slippers. They are made in England and are indeed cosy bad boys. I also opened a lovely new necklace I ordered from Germany over the internet. Things like this are keeping me sane.

The radiology clerk did call me back and had looked into the referral. What started out as a referral for a CT scan from Mum's oncologist had somehow materialised into an appointment for an MRI. "Oh dear", I said. The lady was very sympathetic and said she would leave a note for one of the radiologists. I said I'd phone through to the oncologist's secretary, who again was very sympathetic and would pass on the message to her consultant. It has all got a bit cloak and dagger as I have colluded with both the radiology clerk and oncology secretary in not telling Mum about the MRI mix up. It would only cause panic and problems, and whilst it feels like I'm being dishonest ("Yes Mum, they're sorting out an appointment for you!") I think avoiding panic and problems is probably best for Mum's well being. And for mine perhaps...

Last week I managed to get Mum to the dentist after all. Unfortunately she had to have a filling, but that was better than having to have the tooth taken out, which was what the dentist really wanted to do. Mum was actually ok after the filling and said she fancied a fishcake from the chip shop, so I stayed for a bit longer than I was going to, went out to the chip shop and had lunch with her. If I can do small things like this, I think I will look back and feel like I tried. I do have an overwhelming feeling at times that we are living on borrowed time, like I really do have such a short amount of time left with Mum, but then I get so tired I feel like I need to have a rest rather than going to see her. Then I sit there, "resting", but my brain is ticking like a bomb because I'm thinking that one day I won't even have the option to nip over to see Mum, because she'll be gone. And then I think that one day I will have to be there to help and take care of things, so I need a reserve to draw on when that day comes, so rest I must. Such are the quandaries of a carer I suppose.

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...