Admin & Clerical

I'm wondering if Mum is not well at the moment, or if she's just not got the will to be well. She's been in bed for virtually the whole time since she had her radiotherapy and is not eating much, although I did twist her arm to eat a tiny piece of toast from the world's smallest loaf when I called round yesterday morning. I did put a great deal of butter on, so she did have some calories, even though she wouldn't eat the crusts. I can't actually get to the bottom of why she won't eat. Sometimes she says she feels sick and other times she says she just doesn't fancy anything. As she's currently on steroids, this lack of appetite is quite strange. The oncologist did say that Mum would feel tired after radiotherapy, but to this extent? And with no appetite? I'm thinking it's going to be a temporary thing, but as the MacMillan Nurse has mentioned Hospice at Home when she phoned Mum today, maybe not. Whilst Mum is poorly, I can't really see that she's ill enough to have round-the-clock nursing care. I mean, what would they actually do? Make small toast and small talk to pass the time?

I got a call from Mum yesterday, when she had actually meant to be calling the social worker back. She had pressed redial, instead of dialing 1471, after just taking a call from said social worker. She said the social worker was calling round on Friday, supposedly followed by a visit from a co-ordinator from the care providers, but Mum didn't know why they were going. I thought it would be best to go round to Mum's to sort everything out, as I knew there was a phone number for the social worker there. I found the number and gave her a call, and she told me that she's going round with the district nurse to do an assessment. The care co-ordinator was going round as Mum had expressed problems with the carers. I pointed out that this visit seemed unnecessary, so we agreed that I would put all the issues in an email and she would pass them on to the care providers. Job done.

There was more phoning to do for various bits of information and requests, and looking through all sorts of files for correspondence about her benefits, so I ended up feeling like Mum's personal assistant. At least this is me being useful and means I can get to the bottom of some of the issues that Mum isn't taking on board, like why people are actually going to see her. This seems such a fundamental lack of interest, particularly when she phones me in an angry mood, expressing frustration at not knowing what's happening. I just don't know why she doesn't ask questions. It's not like she's 90.

Friday's assessment will be fun as Mum was cross today on receiving an outline of issues from the social worker. Apparently it was all wrong. Talk about start off on the wrong foot.

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!

In which I attempt to call in the Cavalry

Last night I decided to get the patient liaison people involved with Mum's appointment fiasco. I phoned the PALS this morning, who said they would try to contact the appropriate matron to help. I've just spoken to matron, who made all the right noises, but essentially nothing is really happening. Mum's oncologist is away, so the matron has simply gone to put a note on said oncologist's desk. She told me that the oncologist has a clinic at a different hospital on Monday morning, so might not even see the note until Tuesday. When I asked if someone would be letting me know what's happening, matron blustered like a senior politician on Newsnight, so I asked again if someone would let me know. Eventually she said that she would keep a copy of the email that PALS had sent through and she would check up on everything next week.

I am left wondering if all this is good enough. Cancer seems all about waiting, frustration, organising, waking up with a sense of dread in the morning, chasing things up. It doesn't seem very much about caring right now.

Using the word cavalry in the title of this post actually reminds me of my favourite Emily Dickinson poem:

To fight aloud, is very brave -
But gallanter, I know
Who charge within the bosom
The Cavalry of Woe -

Fighting aloud doesn't seem to have got me very far this time. Maybe you are right Emily.

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...