As you all know, today Massimo was due to go to GOS for the usual MOT day, a double dose of chemo and a CT scan. I had organised for J’s Step-Mum to come with us as it is impossible for me to drive that distance with Massimo on my own and J can’t keep taking days off from work. In the end he didn’t go to work today as he was at the doctors’ in the morning and at St George’s in the afternoon!
So Mal very kindly offered to get up extremely this morning (about 5.45 am I think!) and basically play chauffeur and companion to Massimo and me for the day. We set off bright and early (about 8.15) and stumbled across our first problem when the fob on my key ring refused to open the car doors. At this point we should really have called it a day and all gone back to bed as the day did not improve.
As far as the car is concerned I actually had spare batteries and once they were inserted the fob worked fine. Traffic to GOS was fairly light and we got there in extremely good time. Parking around GOS is however £7.20 for 2 hours and having put all our change in the metre we had paid for all of one hour and five minutes. In we trundled and up to Parrot Ward the neurosurgery ward where the CT scan would be organised before our transfer up to the Elephant Day Centre (oncology). On our arrival I asked whether the scan was being done under sedation or under General Anaesthetic, as at St George’s he seems to have had things done under General. This sent the nurse I was talking to into a spin, she asked the doctor who came to speak to me, I told her that I wasn’t querying it as such just mentioning it in passing, so she called the anaesthetist to come and review Massimo. When under sedation, there is no need for an anaesthetist to be around, so they have to be very careful that the patients going in for sedation are well enough to deal with the procedure. The bad news at this point was that if Massimo needed a GA instead of sedation then we would have to come back on a different day. What I finally discovered is that when under a general anaesthetic all patients are ventilated (i.e. a machine breathes for you) but under sedation this does not happen and the effect of the sedation is to make your breathing harder. Of course Massimo is not a good candidate for this type of procedure because he (a) has a tracheostomy – his windpipe is not clear and he cannot breathe normally, (b) he has bronchomalacia – his left lung main broncheole is small and therefore cannot ‘breathe’ as well as his right and (c) he has a tumour in his airway that may or may not become a problem at any given moment in time. The poor anaesthetist who came to review Massimo had only been there a week and he apologised profusely for the general mismanagement of the situation and the doctor called to arrange an alternative appointment. Luckily there is a cancellation for tomorrow at 2 pm.
So off we went to the Elephant Day Centre. Please note that at this point Mal had already been off to feed the metre once. Up on the sixth floor we are first told that we are in the wrong place and that we should be on Parrot Ward until I explained that we had been on Parrot Ward and all had been postponed. This is when we stumbled across problem number 2: the chemo had not been ordered up from the pharmacy for today and so they had had to redo the prescription and it wouldn’t be ready for a little while. In the meantime Massimo was weighed (6.89 kgs or 15 lbs 3 oz) and measured (62.5 cms or 24.6 inches or 2 feet), his blood pressure and temperature taken. After a while the nurse came to tell us that the drugs wouldn’t be up before 1 pm at the earliest (it was about 11.30 am but that we could see the doctor first and then maybe go off to have some lunch and come back for the chemo. So we waited and waited but the doctor had gone off to do something for 5 minutes and never came back. At about 12 we went off for lunch.
On our way out I asked at the front desk about parking for tomorrow and was given a parking permit for the day for today and told I just needed to ask for one for tomorrow AND that if I bring my congestion charge receipt they will reimburse that too! So that was GOOD news!
After a nice lunch we trundled back to the hospital at around 1.30 pm thinking that at least this way we’ve given them a little more time to sort themselves out, but on arrival at the ward the nurse told us that the chemo would not be ready now until 2 pm but that we could go straight in to see the doctor. So Massimo and I met Michael (his surname is far too difficult to remember). He is a lovely chap and the first thing he told me was that this dose is going to be much bigger than his previous ones because they have had to recalculate his doses based on the fact that he is now more than 6 months old. Errr, says I, he is over 6 months but he was 2 months premature. Ah, says he, then he can’t have the higher dose because his kidneys aren’t mature enough. So cancel the pharmacy order and start again. We’ll do this tomorrow, suggest Michael, that will save you from hanging around any longer. In a flash we were out the door and heading home with nothing, absolutely nothing achieved!
However, tonight the day respite nurse came at 6 pm so that J and I could go out for a meal, just the two of us and it was lovely. The only downside was that J’s asthma sent us home just a little earlier than strictly necessary. So tomorrow I am off to GOS again but this time I have asked for the hospital to provide transport as, I said, I couldn’t get someone to accompany me at such short notice. I know that someone would have been kind enough to step up and help but I really did feel that as it was not our fault that everything went wrong today, especially as I HAD called on Wednesday and Thursday to ensure that all would go smoothly and had confirmation from two of their nurses that all was organised, so a little extra help from them wasn’t out of order!
I hope, I really hope, that tomorrow will be a more successful day!