Wednesday 5th July
I thought I would be going home yesterday, but they kept me dangling on a little string (well, it was a blood-filled tube) until about 16.00 to tell me that they really want to keep me in to check my platelets in the morning. Mmmm, it was disappointing but then ok, if that is best, I mean I don’t want to end up having to come back in once I have been discharged.
Had my immunotherapy and then a bag of blood.. and by that time it was about 16.30. Ed came in and we went and sat downstairs on the huge balcony which is decorated huge ceramic planters filled with wild flowers.. I am very impressed! They have a ‘wildness’.. that I am growing to appreciate more and more (think our garden bears a very close likeness to these!... and I love that, all the better for encouraging little hedgehog friends to visit!) It was very warm yesterday so we went to the 1st floor café, got ice-creams and then went to enjoy them on the flowery balcony. It almost wasn’t like being in hospital! I just have to get this other thing off my chest – it’s another Dutch culinary quirk!.. So, the good old ‘Rum ‘n’ Raisin’ flavour ice-cream that was alive and well and thriving in the 1980’s in the UK, does still exist here… but under another name… I won’t even throw it open t guesses because you won’t .. “Malaga”…. what a weird one! Well, now I have discovered that it lives on and prospers here, I have been trying to have it at every opportunity. (I’ve had it 3 times)
After our sunny interlude on the balcony, pretending that we weren’t in hospital, we went back to our room and picked up my leftover dinner from the fridge. This was what Una had made and brought in on Tuesday. It was delicious fresh pasta, grilled veg, peas from the garden, home-made pesto… oh my goodness it as good! I had plenty left for a second meal so I picked that up (did I also mention, that I am campaigning for “Malaga” ice-cream to be on the starter menu of many a fine restaurant!?) Went back to the room and started on that, and then Paula and Dave arrived for a visit. They stayed and kept me entertained and out of mischief for a couple of hours and then when they left, I resolved to get myself sorted out for bed and then would be able to read or watch TV and still go to sleep at a normal time. The next thing I knew, I woke up lying on top of my duvet cover, with cold feet, T V on but lights off and it was 23.45. Bummer! I wanted to set my alarm to take pain killers at regular, strategically timed intervals so that I wouldn’t wake up in pain. Well, I took some pain killers and then set my alarm to see if it would still work. I did sleep fairly well, not quite as well as the previous night when I had executed my plan properly, but still it was much better than nights I was having last week.
Well another new development has been an enormous bulbous carbuncle appearing on my nose! What on earth is that about? That has never ever happened before! It does feel like I am supporting another species on the end of my nose.. it seems to be creeping further and further to the edge and I think if I look at it from the side, there is a separate profile! It is horrendous but I have a sort of sick obsession with it and can’t really imagine what is going to happen next. Will it build an extension and sublet it to a bunion?
Thursday 6th July
As I was having my shower, clumsily (and unsuccessfully) trying to drain the water that had collected in the plastic hygienic glove that I was wearing over my IV needle to keep it dry, I was thinking about leaving places or leaving things empty. Of course, I was thinking about my own hospital exit strategy, but it was then that I realised that Holland is facing mass exodus this weekend. The middle part of the country’s schools all finish tomorrow or have already finished, and it seems like anyone with school-age children is making as sharp an exit as is humanly possible! I do understand that people want to make the most of their holiday allowance at work and just want to start their holiday as soon as possible, but this seems extreme.
So, it is a mass exodus; the only people left in Holland will be oldies, (who have just returned from the pre-season camper/caravan adventure) people without kids who can actually choose when to take their holiday or those without enough money to leave (although, you Belgium or Germany are easily accessible within an hour or two maximum, so even that isn’t a real excuse!) Normally we would also be getting ready to go on our annual adventure.. or have started one, not sure where we had discussed going this time. We normally talk about our next holiday destination when we are on the previous one! There are so many places still on the list to go; a safari in Africa was one of them, plus a few European options and a few further afield (Asia, South America). Well, despite having some pangs of jealousy, things have just been too busy and I have been preoccupied with so many other things, I am not lying awake at night desperately missing a holiday. In fact, there is something nice about being here while everyone else has left! It’s not often that Saturdays in Utrecht are gentle strolls rather than military style obstacle courses with the aim of obtaining essential items, followed quickly by ‘high speed’ bike exit route.
Had my first appointment at UMC today for radiotherapy; the appointment was at 11.45 and I as being picked up by ambulance again. Felt this is really excessive use of hospital resources, but what can you say?! Anyway, went and had my appointment, CT scan again and then waited about 2.5 hours for the first radiotherapy session (I will have 5 consecutive sessions) I had already organised to meet up with the EBR team teachers on this Thursday, and since the UMC is the university campus near where we teach (… they teach, I taught) I thought they might be able to shift location without too much difficulty. It worked! So I met up with Betty, Maria and Anna, really lovely colleagues/friends and we had lunch together over a nice catch up. What was really great is that we didn’t talk about cancer, but other stuff, of course I gave them updates and we briefly discussed it but it wasn’t a depressing medical update lunch! That helped me to pass about an hour or so, then I got a bed in the waiting area for about half an hour before the test. This one was actually quite painful because it felt like I had to lie still for a long time which is really uncomfortable because I am on a hard bed, lying on the sensitive area and it’s obviously essential that you don’t move!
My sister-in-law and family are victims of the mass exodus as well, leaving on Saturday morning headed in the French direction, so she dropped in to see me his evening before their holiday. It was quite an obstacle course for her to get into the room when she arrived around 20.00 because there was a crowd of people outside my door and the door of my neighbour’s room. They were wailing and screeching, not all of them, a few women. It was really sad and distressing, clearly a relative was dying or had already died. It was quite upsetting and unsettling because I felt a bit locked up in my room when Ingrid had left, I had to have the door closed otherwise I would have been part of the mourning party, but I also didn’t like being closed off from everyone else. The nurse came around to give me my medication around 21.00 and they said that a, she did the air-quote motion with her hands “foreign” patient was dying and their family wanted to be there. She said they would be moved along before night time (I assume she meant shift-change at 22.00) so I wouldn’t be disturbed at night. Of course, it was disturbing, but I could try and drown it out a bit by watching TV and turning the sound up, but they can’t turn off the fact that a family member is dying so I think they definitely come off worse.
My nurses seemed to think that I will be able to exit tomorrow! Really hope I can be home tomorrow evening, with a bit of time to get ready for Caela being here!
Bunion breaking news: it’s still there, getting a little more sensitive and instead of making my whole nose red and lumpy, it has shifted down towards the tip of my nose and the right hand side. I do not know what is the best way to tackle this or whether to just leave it and let nature take its (ugly and painful) course. Still, walking and talking, I think I should leave it for now. It is actually morbidly fascinating and I want to see what happens.