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.

Stop press! Car news!

The breakdown service cometh and the car in Mum's garage is now going again! Horrah! Apparently the battery needed replacing and a tyre needed pumping up, not that the latter reason was why the breakdown service needed calling out, not that I event knew about the tyre, but never mind. So it's over to me to get the MOT sorted, then either brother embraces utilising the car or Mum will sell it. I told Mum selling the car might actually be the best option the other day during my rant, which she has now mentioned to brother. When I asked Mum what he thought about selling the car as an alternative, she said that he was thinking about it. Looks like we'll have an outcome in about six months then! At least with an MOT, in theory Dad's car should be able to keep on truckin'. Goodness only knows what he would have thought of all this nonsense.

Another odd development is the fact that Mum has chipped a tooth and I need to get her to a dentist's appointment. Quoting Ogden Nash,

Some tortures are physical,
And some are mental,
But the one that is both
Is dental.

Both Mum and I know how he feels.

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...